(repost from 2008)
No One Knows....
by Dawn Williamson
No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.
No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.
No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.
No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.
No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.
No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.
No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.
No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.
No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.
No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.
No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.
No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.
No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.
No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.
No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.
No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.
No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.
No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.
No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.
No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.
No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.
No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.
No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.
No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.
No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.
No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.
No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.
No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.
No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.
No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.
No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.
No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.
No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.
No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.
No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.
No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.
No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.
No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.
No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.
No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.
No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.
No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.
No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.
No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.
No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.
No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.
No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.
No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.
No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.
No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.
No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.
No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.
No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.
No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.
No one knows what it's like to lose your child - unless they have been there themselves.
No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.
No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.
No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.
No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.
No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.
I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.
And I know over 3400 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.
http://www.cdhsupport.org
Showing posts with label birth defect. Show all posts
Showing posts with label birth defect. Show all posts
Saturday, November 13, 2010
Saturday, October 2, 2010
Press Release: Congenital Diaphragmatic Hernia Charity Recruits Voters to Win $375,000 to Help Critically Ill Babies And Their Families
Press Release: Congenital Diaphragmatic Hernia Charity Recruits Voters to Win $375,000 to Help Critically Ill Babies And Their Families
Local Nonprofit Organization In National Pepsi Refresh Contest In The Running For $375,000 To Help Raise Awareness and Research Funds for Devastating Birth Defect
10-01-2010
Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) has climbed an uphill battle for 15 years to raise awareness and research fund and to continue to finance support services. Now, they battle alongside other charities to fight for funding in the Pepsi Refresh contest.
On the first of each month, for 6 months, up to a dozen volunteers stayed awake until midnight when Pepsi Refresh opened the application process for new projects. Feverishly clicking their computer keys to be one of the 1000 application accepted in the 2 minutes the system was open each month before the application limit was reached. Finally, in July two applications made it through and they were in the August contest; $25,000 to provide financial assistance for families hospital travel expenses and $25,000 to provide easy-to-understand information for hospitals. For CHERUBS, the contest now began.
Coming off the all-summer long APX Gives Back contest, in which they they won 2nd place nationally for a prize of $30,000, CHERUBS members and voters were tired but diligently went back to work to try to win a Pepsi grant. "Never did we expect to be in 2 huge contest back-to-back, nor have this incredible opportunity to try to win funds of this size. But here we are and we are so excited for the chance to be able to fund so many greatly needed projects” said CHERUBS President, Dawn Williamson.
The contest grew even bigger for CHERUBS when 3 more projects made it into the September contest; $250,000 for research funds, $50,000 for an awareness campaign and $25,000 for care packages for families. With their previous 2 projects making the top 100 and rolling over to another month's voting, CHERUBS now has 5 projects in Pepsi Refresh.contest, an unheardof accomplishment. "5 projects are a lot, but we didn't plan this and this is 5 opportunities, not 5 sure wins. We have a lot of work to do to win even 1 of these project grants" says Williamson. "These projects are laid out, every cent won has plans attached to it to help babies and families affected by Congenital Diaphragmatic Hernia. All 5 of these projects could help 1000's. 30,000 babies are born with CDH every year and 15,000 of those babies don't survive. There are 100's of thousands of CDH families who need help. This is the largest grant possibility for these families that has been ever available. We are excited about this opportunity to do so much good!"
CHERUBS members are excited too. The charity's web site shows photos of children holding up signs and asking for votes, while wearing wings and holding cans of Pepsi. Facebook is littered with adorable profile photographs of more children asking for votes. There are videos, bumper stickers, flyers, banners, signs in yards, school projects and 1000's of posts on-line to raise awareness and votes. "The excitement is contagious. Our members are so happy to be able to do something to help other CDH families. CDH makes you feel so helpless, we don't often get opportunties like this to really make a difference by doing something as simple as voting. And to be able to use our own children's photos and stories to raise awareness on such a huge level is thrilling for so many of us!" says Williamson.
CHERUBS not only raising awareness and voting for cash for their cause but an added bonus is networking with other causes. “We are so excited to be in this contest and to be in the company of so many other wonderful charities and projects! We have learned so much about other causes and became friends with many. No matter who wins this contest each month, we will all come out as winners. This has been a wonderful platform to raise awareness for all of our causes”.
Founded in 1995 by Mrs. Williamson and based here in the Triangle, CHERUBS is the world’s first and largest CDH organization with over 3400 members in 38 different countries and all 50 states. Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Shane spent his first 10 months in the pediatric intensive care unit of Duke University and had many other hospitalizations and surgeries at the University of North Carolina at Chapel Hill.
“I miss my son every single day; CDH took him from me and robbed him of any type of normalcy during his short life,” said Williamson. “No mother’s arms should ever ache for a child she can no longer hold.”
Williamson made it her life’s mission to help other families affected by Congenital Diaphragmatic Hernia. If there is any doubt of faithfulness to this mission you need only to read the glowing reviews families around the world have posted all over the internet about how CHERUBS has helped them through their darkest days, see all the services listed on their web sites or count the over 12,000 fans they have on Facebook.
Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. It affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year, half of which do not survive. Some of the other half, like Williamson’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, or long-term pulmonary problems.
In the U.S., there are annually more victims from CDH than tornados, hurricanes and lightening strikes combined. There are more children born each year with CDH than there are children born with Cystic Fibrosis or Spina Bifida, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH. According to a Congressional Bill the charity is hoping to get passed for CDH Research, the estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000 while annual grants allocated by the National Institutes of Health for CDH at several research facilities is currently estimated at less than $5,000,000. Through this contest and other efforts, CHERUBS hopes to raise more awareness and funds for research and family support. “These babies are dying by the thousands and there is no known cause. The survival rate is only 50%. This just cannot be acceptable” says Williamson.
“This contest has not only allowed us to dramatically raise awareness about Congenital Diaphragmatic Hernia but it has offered us the opportunity to raise more money for our charity than we ever have before. $375,000 can do so many things for the CDH community and we are so grateful to Pepsi Refresh and to everyone who is voting for us.” For a small charity powered by volunteers, donations and fundraisers and run in a spare room of Williamson’s home to save funds, $375,000 could indeed go a long way. “We have over 3300 members and all of our services are free to CDH families. We run a very large web site with forums for families to gain information and support 24 hours a day, an annual international Congenital Diaphragmatic Hernia conference, the world’s largest CDH research database, we send care packages to new and expectant parents and so many, many other services on less than $35,000 a year. Our budget averages about $10 of assistance per family, which is ridiculous but we somehow pull it off. Winning this contest could do so much for our ability to help more CDH families!” says Williamson.
Families affected by CDH agree. “I vote because my sweet baby Mallory has opened our eyes to a terribled condition that we knew nothing about at the time. And from the statistics we have learned about CDH it saddens me that this illness is so unknown. CHERUBS has been my crutch from day one of diagnosis. I cannot imagine going through all of this without the support and information I have gotten from the organization and its members. Mallory was born on Jan. 4th of 2010, and still going strong in the hospital, and CHERUBS has been there for us every step of the way. God bless you all, and thank you from the bottom of my heart” says mom Sara Jimel Givent.
“I am voting in memory of our sweet Joshua who was born on March 26, 2010 and was with us 16 days. We love him and miss him terribly. If CHERUBS can win the $100,000, maybe another family won't have to go through this” wrote dad Jeff Campbell.
“Voting for my son Brandon who was diagnosed with CDH two days before his delivery in 2004. The only information we could find that even gave us hope was "CHERUBS". His outlook was not good but he is strong and healthy today because of UNC Children’s Hospital and Brandon’s drive to survive. Thanks CHERUBS for all the hard work and dedication that you provide for families struggling with this horrible birth defect. You gave us hope when we had none and during the long stay in the hospital. This continued even when we were dealing with many of the issues after we finally got him home” writes Fayetteville resident Cheryl Sandoval.
The fight to help these families is also obviously apparent in the members of CHERUBS. “When I was lost and all alone I turned to the internet hoping to find someone who cared...I found CHERUBS and a WHOLE BUNCH of FABULOUS someones who KNEW how I felt without me having to explain...CHERUBS has been my lifeline through our journey with CDH. There is always someone there with a comforting word when you need it, or someone who listen to you rant and vent when need be. It's a WONDERFUL group of people who I am proud to call my CDH family. I'm so sorry we've all met due to CDH, but if we all stick together, there's no telling what we can do to help rid the world of this terrible birth defect” says Canadian mom Shana Kelly.
CHERUBS welcomes the community’s support and votes in this contest. If you would like to help this organization you can vote through their web site at http://www.voteforcdh.org or through Facebook or text.
Proceeds from the contest will benefit CHERUBS Research, Awareness and Support Funds, and Williamson is hoping that the contest will bring out many supporters and media to help gain recognition for both CDH and the organization’s efforts.
CHERUBS will also gladly accept any donations to help further their work. Tax-deductible donations can be made on-line at http://www.cdhdonations.org or mailed to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587.
To help raise more awareness and money for the organization, as well as funds to continue research and outreach, CHERUBS will be hosting a key fundraising event this fall. The CHERUBS 2010 Masquerading Angels Ball will be a formal event held on October 30th at the Durham Hilton near Duke with celebrity guests, a live band, casino and an auction. More information on this event is available at http://www.cherubsangelball.org
“There is still so much research that needs to be done. In 2010 this birth defect should not still exist, much less still have so many unanswered questions and so little research,” said Williamson. “CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH and we will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found.”
About CHERUBS
CHERUBS is a 501(c)3 organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of June 2010, CHERUBS has over 3400 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.
http://www.voteforcdh.org
http://www.cdhsupport.org
http://www.cherubsangelball.org
Local Nonprofit Organization In National Pepsi Refresh Contest In The Running For $375,000 To Help Raise Awareness and Research Funds for Devastating Birth Defect
10-01-2010
Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) has climbed an uphill battle for 15 years to raise awareness and research fund and to continue to finance support services. Now, they battle alongside other charities to fight for funding in the Pepsi Refresh contest.
On the first of each month, for 6 months, up to a dozen volunteers stayed awake until midnight when Pepsi Refresh opened the application process for new projects. Feverishly clicking their computer keys to be one of the 1000 application accepted in the 2 minutes the system was open each month before the application limit was reached. Finally, in July two applications made it through and they were in the August contest; $25,000 to provide financial assistance for families hospital travel expenses and $25,000 to provide easy-to-understand information for hospitals. For CHERUBS, the contest now began.
Coming off the all-summer long APX Gives Back contest, in which they they won 2nd place nationally for a prize of $30,000, CHERUBS members and voters were tired but diligently went back to work to try to win a Pepsi grant. "Never did we expect to be in 2 huge contest back-to-back, nor have this incredible opportunity to try to win funds of this size. But here we are and we are so excited for the chance to be able to fund so many greatly needed projects” said CHERUBS President, Dawn Williamson.
The contest grew even bigger for CHERUBS when 3 more projects made it into the September contest; $250,000 for research funds, $50,000 for an awareness campaign and $25,000 for care packages for families. With their previous 2 projects making the top 100 and rolling over to another month's voting, CHERUBS now has 5 projects in Pepsi Refresh.contest, an unheardof accomplishment. "5 projects are a lot, but we didn't plan this and this is 5 opportunities, not 5 sure wins. We have a lot of work to do to win even 1 of these project grants" says Williamson. "These projects are laid out, every cent won has plans attached to it to help babies and families affected by Congenital Diaphragmatic Hernia. All 5 of these projects could help 1000's. 30,000 babies are born with CDH every year and 15,000 of those babies don't survive. There are 100's of thousands of CDH families who need help. This is the largest grant possibility for these families that has been ever available. We are excited about this opportunity to do so much good!"
CHERUBS members are excited too. The charity's web site shows photos of children holding up signs and asking for votes, while wearing wings and holding cans of Pepsi. Facebook is littered with adorable profile photographs of more children asking for votes. There are videos, bumper stickers, flyers, banners, signs in yards, school projects and 1000's of posts on-line to raise awareness and votes. "The excitement is contagious. Our members are so happy to be able to do something to help other CDH families. CDH makes you feel so helpless, we don't often get opportunties like this to really make a difference by doing something as simple as voting. And to be able to use our own children's photos and stories to raise awareness on such a huge level is thrilling for so many of us!" says Williamson.
CHERUBS not only raising awareness and voting for cash for their cause but an added bonus is networking with other causes. “We are so excited to be in this contest and to be in the company of so many other wonderful charities and projects! We have learned so much about other causes and became friends with many. No matter who wins this contest each month, we will all come out as winners. This has been a wonderful platform to raise awareness for all of our causes”.
Founded in 1995 by Mrs. Williamson and based here in the Triangle, CHERUBS is the world’s first and largest CDH organization with over 3400 members in 38 different countries and all 50 states. Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Shane spent his first 10 months in the pediatric intensive care unit of Duke University and had many other hospitalizations and surgeries at the University of North Carolina at Chapel Hill.
“I miss my son every single day; CDH took him from me and robbed him of any type of normalcy during his short life,” said Williamson. “No mother’s arms should ever ache for a child she can no longer hold.”
Williamson made it her life’s mission to help other families affected by Congenital Diaphragmatic Hernia. If there is any doubt of faithfulness to this mission you need only to read the glowing reviews families around the world have posted all over the internet about how CHERUBS has helped them through their darkest days, see all the services listed on their web sites or count the over 12,000 fans they have on Facebook.
Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. It affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year, half of which do not survive. Some of the other half, like Williamson’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, or long-term pulmonary problems.
In the U.S., there are annually more victims from CDH than tornados, hurricanes and lightening strikes combined. There are more children born each year with CDH than there are children born with Cystic Fibrosis or Spina Bifida, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH. According to a Congressional Bill the charity is hoping to get passed for CDH Research, the estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000 while annual grants allocated by the National Institutes of Health for CDH at several research facilities is currently estimated at less than $5,000,000. Through this contest and other efforts, CHERUBS hopes to raise more awareness and funds for research and family support. “These babies are dying by the thousands and there is no known cause. The survival rate is only 50%. This just cannot be acceptable” says Williamson.
“This contest has not only allowed us to dramatically raise awareness about Congenital Diaphragmatic Hernia but it has offered us the opportunity to raise more money for our charity than we ever have before. $375,000 can do so many things for the CDH community and we are so grateful to Pepsi Refresh and to everyone who is voting for us.” For a small charity powered by volunteers, donations and fundraisers and run in a spare room of Williamson’s home to save funds, $375,000 could indeed go a long way. “We have over 3300 members and all of our services are free to CDH families. We run a very large web site with forums for families to gain information and support 24 hours a day, an annual international Congenital Diaphragmatic Hernia conference, the world’s largest CDH research database, we send care packages to new and expectant parents and so many, many other services on less than $35,000 a year. Our budget averages about $10 of assistance per family, which is ridiculous but we somehow pull it off. Winning this contest could do so much for our ability to help more CDH families!” says Williamson.
Families affected by CDH agree. “I vote because my sweet baby Mallory has opened our eyes to a terribled condition that we knew nothing about at the time. And from the statistics we have learned about CDH it saddens me that this illness is so unknown. CHERUBS has been my crutch from day one of diagnosis. I cannot imagine going through all of this without the support and information I have gotten from the organization and its members. Mallory was born on Jan. 4th of 2010, and still going strong in the hospital, and CHERUBS has been there for us every step of the way. God bless you all, and thank you from the bottom of my heart” says mom Sara Jimel Givent.
“I am voting in memory of our sweet Joshua who was born on March 26, 2010 and was with us 16 days. We love him and miss him terribly. If CHERUBS can win the $100,000, maybe another family won't have to go through this” wrote dad Jeff Campbell.
“Voting for my son Brandon who was diagnosed with CDH two days before his delivery in 2004. The only information we could find that even gave us hope was "CHERUBS". His outlook was not good but he is strong and healthy today because of UNC Children’s Hospital and Brandon’s drive to survive. Thanks CHERUBS for all the hard work and dedication that you provide for families struggling with this horrible birth defect. You gave us hope when we had none and during the long stay in the hospital. This continued even when we were dealing with many of the issues after we finally got him home” writes Fayetteville resident Cheryl Sandoval.
The fight to help these families is also obviously apparent in the members of CHERUBS. “When I was lost and all alone I turned to the internet hoping to find someone who cared...I found CHERUBS and a WHOLE BUNCH of FABULOUS someones who KNEW how I felt without me having to explain...CHERUBS has been my lifeline through our journey with CDH. There is always someone there with a comforting word when you need it, or someone who listen to you rant and vent when need be. It's a WONDERFUL group of people who I am proud to call my CDH family. I'm so sorry we've all met due to CDH, but if we all stick together, there's no telling what we can do to help rid the world of this terrible birth defect” says Canadian mom Shana Kelly.
CHERUBS welcomes the community’s support and votes in this contest. If you would like to help this organization you can vote through their web site at http://www.voteforcdh.org or through Facebook or text.
Proceeds from the contest will benefit CHERUBS Research, Awareness and Support Funds, and Williamson is hoping that the contest will bring out many supporters and media to help gain recognition for both CDH and the organization’s efforts.
CHERUBS will also gladly accept any donations to help further their work. Tax-deductible donations can be made on-line at http://www.cdhdonations.org or mailed to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587.
To help raise more awareness and money for the organization, as well as funds to continue research and outreach, CHERUBS will be hosting a key fundraising event this fall. The CHERUBS 2010 Masquerading Angels Ball will be a formal event held on October 30th at the Durham Hilton near Duke with celebrity guests, a live band, casino and an auction. More information on this event is available at http://www.cherubsangelball.org
“There is still so much research that needs to be done. In 2010 this birth defect should not still exist, much less still have so many unanswered questions and so little research,” said Williamson. “CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH and we will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found.”
About CHERUBS
CHERUBS is a 501(c)3 organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of June 2010, CHERUBS has over 3400 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.
http://www.voteforcdh.org
http://www.cdhsupport.org
http://www.cherubsangelball.org
Saturday, August 28, 2010
5000 voters for babies born with CDH - can you help?
We have some AMAZING contest opportunities coming up that could raise Congenital Diaphragmatic Hernia research, support and awareness to levels that we've only dreamed about. But we will need voters! We are hoping to get 5000 daily votes by next week.
Can you help?
http://www.facebook.com/group.php?gid=123312954385123&ref=nf
Join this group and pledge to vote daily to help these babies and families and ask you Facebook Friends to join, pledge and vote too! Together we can take CDH awareness, research and support from our small charity status to the same level of public awareness and support as Autism, Spina Bifida, Muscular Dystrophy, Cyctic Fibrosis and other well known medical conditions. The days of CDH being the "invisible birth defect" are coming to end with your help!
Wednesday, March 31, 2010
Baby Video Goes Viral Raising Awareness of CDH
Press Release:
March 31, 2010
"Parents group puts together video of photos of patients and heartfelt song to help raise awareness across the internet of a deadly and little-known birth defect."
Raleigh, NC - Within 24 hours the new video for "I'll Never Let You Go" by The Jammies featuring over 700 CDH patients has gone viral on YouTube with over 1200 hits in 1 day. 100's more people viewed the video on Facebook and blogs. 1200 hits in a day may not seem as impressive as the millions of hits as the video of the baby dancing to Beyonce's "Single Ladies", but for a group of parents desperate to raise awareness this is quite a feat. Never before has there been such a large collection of photos of these patients, such a huge group of families of these patients and such a passion to work together to raise CDH Awareness.
In this heart wrenching video, photos and information are put to music with a song written by the father of a CDH survivor. The song will soon be available on iTunes.com, with proceeds donated to CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. It has also been adopted as the theme song of the "Save the Cherubs" CDH Awareness Campaign.
http://www.youtube.com/watch?v=vTChMLy2EFk
We are so proud of how much awareness this has bought to Congenital Diaphragmatic Hernia in just a day! Created with photos submitted by families affected by CDH and put together by volunteers, this video has been propelled across cyberspace by families, friends and even strangers who heartstrings are pulled and who want to make a difference by raising more awareness.
Congenital Diaphragmatic Hernia
CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research. CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.
Friday, November 13, 2009
CDC Study Links 2 Antibiotics to Birth Defects
http://health.usnews.com/articles/health/healthday/2009/11/02/cdc-study-links-2-antibiotics-to-birth-defects.html
CDC Study Links 2 Antibiotics to Birth Defects
No added risk was found, however, for most commonly used infection-fighters
Posted November 2, 2009
By Jennifer Thomas
HealthDay Reporter
MONDAY, Nov. 2 (HealthDay News) -- Taking antibiotics during pregnancy does not raise the risk for most birth defects, though there are some exceptions, new research has found.
Penicillin, which is the most commonly used antibiotic during pregnancy, as well as erythromycin, cephalosporins and quinolones, other widely prescribed antibiotics, were not associated with increased risk for about 30 different birth defects.
However, the study found that two types of antibiotics were linked with a higher risk for several birth defects: nitrofurantoins and sulfonamides, sometimes called "sulfa drugs," which are prescribed for urinary tract and other infections.
Women whose children had anencephaly, a fatal malformation of the skull and brain, were three times more likely to have taken sulfonamides, the study found. Sulfonamides were also tied to an increased risk for such heart defects as hypoplastic left heart syndrome and coarctation of the aorta, choanal atresia (a blockage of the nasal passage), transverse limb deficiency and diaphragmatic hernia, an abnormal opening in the diaphragm that results in severe breathing difficulties.
Nitrofurantoins were also associated with multiple birth defects, including anophthalmia and microphthalmos (eye defects) and several congenital heart defects. Mothers whose children were born with a cleft lip or cleft palate were twice as likely to have taken nitrofurantoins, the study found.
But pregnant women should not be overly worried if they need an antibiotic to treat an infection during pregnancy, stressed the study's lead author, Krista Crider, a geneticist with the National Center on Birth Defects and Developmental Disabilities, part of the U.S. Centers for Disease Control and Prevention.
"The most important message is that most commonly used antibiotics do not seem to be associated with the birth defects we studied," Crider said.
The findings are published in the November issue of Archives of Pediatrics & Adolescent Medicine.
Crider and her colleagues analyzed data on more than 13,000 women whose babies had one of more than 30 birth defects, including cleft palate, heart or limb defects and anencephaly. They compared the women's rates of antibiotic usage, from the month leading up to pregnancy through the end of the first trimester, with that of almost 5,000 women whose children did not have a birth defect. The data was culled from the National Birth Defects Prevention Study, which began in 1997 and includes about 30,000 women from 10 states.
Information on the impact of many prescription drugs on developing fetuses is sorely lacking, Crider pointed out. Much of that stems from the fact that ethical considerations preclude conducting drugs trials in pregnant women, she said.
Though many antibiotics have been used safely for decades, resistant strains of bacteria are forcing doctors to use a wider array of antibiotics. For some, little data exist.
The researchers found that about 30 percent of women took an antibiotic between the three months prior to conception and the end of the pregnancy.
Even antibiotics that generally were safe were found to be associated with a few specific birth defects. Women whose babies were born with a certain type of limb malformation were three times more likely to have taken penicillin. Erythromycin, cephalosporins and quinolones were also associated with an increased risk for one or two specific birth defects.
However, the researchers said they did not know if the birth defects were caused by the antibiotics or the underlying infection.
One expert said women need to remember the good antibiotics can do mom and baby, as well. Though many pregnant women want to avoid taking any drugs during pregnancy, infections pose a risk to mother and baby and often need to be treated, said Dr. Jennifer Wu, an obstetrician-gynecologist at Lenox Hill Hospital in New York City.
"Untreated infections during pregnancy can lead to severe consequences, such as maternal sepsis [blood infection] and preterm labor," Wu said. "Yet many patients are afraid to take medications such as antibiotics during pregnancy."
The study "supports the evidence that antibiotics are safe for pregnant women," she said. "It is reassuring for doctors and patients to have more data on necessary drugs for pregnancy."
Crider also stressed that the chances of having a baby with a birth defect remain small, even if an antibiotic has been linked to an elevated risk. For example, the risk of having a child with hypoplastic left heart syndrome is about one in 4,200. Sulfonamides were associated with a three-fold increase, making the likelihood about one in 1,400, she said.
Brand names for nitrofurantoins include Furadantin, Macrobid and Macrodantin. Bactrim and Septra are among the brand names of sulfonamides.
Given the data, Crider said, women should be cautious about taking either of those types of drugs during pregnancy and should discuss other options with their physicians,.
According to the study, the overall risk for having a child with a birth defect is about three percent.
The study did not look at chromosomal defects, including Down syndrome.
More information
The U.S. Centers for Disease Control and Prevention has more on birth defects.
CDC Study Links 2 Antibiotics to Birth Defects
No added risk was found, however, for most commonly used infection-fighters
Posted November 2, 2009
By Jennifer Thomas
HealthDay Reporter
MONDAY, Nov. 2 (HealthDay News) -- Taking antibiotics during pregnancy does not raise the risk for most birth defects, though there are some exceptions, new research has found.
Penicillin, which is the most commonly used antibiotic during pregnancy, as well as erythromycin, cephalosporins and quinolones, other widely prescribed antibiotics, were not associated with increased risk for about 30 different birth defects.
However, the study found that two types of antibiotics were linked with a higher risk for several birth defects: nitrofurantoins and sulfonamides, sometimes called "sulfa drugs," which are prescribed for urinary tract and other infections.
Women whose children had anencephaly, a fatal malformation of the skull and brain, were three times more likely to have taken sulfonamides, the study found. Sulfonamides were also tied to an increased risk for such heart defects as hypoplastic left heart syndrome and coarctation of the aorta, choanal atresia (a blockage of the nasal passage), transverse limb deficiency and diaphragmatic hernia, an abnormal opening in the diaphragm that results in severe breathing difficulties.
Nitrofurantoins were also associated with multiple birth defects, including anophthalmia and microphthalmos (eye defects) and several congenital heart defects. Mothers whose children were born with a cleft lip or cleft palate were twice as likely to have taken nitrofurantoins, the study found.
But pregnant women should not be overly worried if they need an antibiotic to treat an infection during pregnancy, stressed the study's lead author, Krista Crider, a geneticist with the National Center on Birth Defects and Developmental Disabilities, part of the U.S. Centers for Disease Control and Prevention.
"The most important message is that most commonly used antibiotics do not seem to be associated with the birth defects we studied," Crider said.
The findings are published in the November issue of Archives of Pediatrics & Adolescent Medicine.
Crider and her colleagues analyzed data on more than 13,000 women whose babies had one of more than 30 birth defects, including cleft palate, heart or limb defects and anencephaly. They compared the women's rates of antibiotic usage, from the month leading up to pregnancy through the end of the first trimester, with that of almost 5,000 women whose children did not have a birth defect. The data was culled from the National Birth Defects Prevention Study, which began in 1997 and includes about 30,000 women from 10 states.
Information on the impact of many prescription drugs on developing fetuses is sorely lacking, Crider pointed out. Much of that stems from the fact that ethical considerations preclude conducting drugs trials in pregnant women, she said.
Though many antibiotics have been used safely for decades, resistant strains of bacteria are forcing doctors to use a wider array of antibiotics. For some, little data exist.
The researchers found that about 30 percent of women took an antibiotic between the three months prior to conception and the end of the pregnancy.
Even antibiotics that generally were safe were found to be associated with a few specific birth defects. Women whose babies were born with a certain type of limb malformation were three times more likely to have taken penicillin. Erythromycin, cephalosporins and quinolones were also associated with an increased risk for one or two specific birth defects.
However, the researchers said they did not know if the birth defects were caused by the antibiotics or the underlying infection.
One expert said women need to remember the good antibiotics can do mom and baby, as well. Though many pregnant women want to avoid taking any drugs during pregnancy, infections pose a risk to mother and baby and often need to be treated, said Dr. Jennifer Wu, an obstetrician-gynecologist at Lenox Hill Hospital in New York City.
"Untreated infections during pregnancy can lead to severe consequences, such as maternal sepsis [blood infection] and preterm labor," Wu said. "Yet many patients are afraid to take medications such as antibiotics during pregnancy."
The study "supports the evidence that antibiotics are safe for pregnant women," she said. "It is reassuring for doctors and patients to have more data on necessary drugs for pregnancy."
Crider also stressed that the chances of having a baby with a birth defect remain small, even if an antibiotic has been linked to an elevated risk. For example, the risk of having a child with hypoplastic left heart syndrome is about one in 4,200. Sulfonamides were associated with a three-fold increase, making the likelihood about one in 1,400, she said.
Brand names for nitrofurantoins include Furadantin, Macrobid and Macrodantin. Bactrim and Septra are among the brand names of sulfonamides.
Given the data, Crider said, women should be cautious about taking either of those types of drugs during pregnancy and should discuss other options with their physicians,.
According to the study, the overall risk for having a child with a birth defect is about three percent.
The study did not look at chromosomal defects, including Down syndrome.
More information
The U.S. Centers for Disease Control and Prevention has more on birth defects.
Friday, October 9, 2009
Congenital Diapraghmatic Hernia: What Happens After Birth?
"Treatment and care for a baby with Congenital Diapraghmatic Hernia (CDH). Presented by Roberta Keller MD, Director of the ECMO Program, UCSF Neonatology, and the UCSF Fetal Treatment Center"
Wednesday, May 6, 2009
“Our Heartbreaking Choices” by Christie Brooks
“Our Heartbreaking Choices”
by Christie Brooks, mom to cherub Madison Brooks
by Christie Brooks, mom to cherub Madison Brooks
Pregnancies aren’t always perfect. Prenatal testing can reveal life-threatening issues with the baby’s health, which can leave a parent contemplating the unthinkable- ending the pregnancy. Christie Brooks, a CHERUBS member, made the heartbreaking decision to interrupt her pregnancy in 2003 when her baby was diagnosed in utero with a left-sided diaphragmatic hernia. Through online support networks she was able to connect with other mothers who made the same agonizing decision, but for a variety of different anomalies. Together they put their stories in a book and self-published it last October. The book, “Our Heartbreaking Choices,” contains the personal stories of 46 women who interrupted their much-wanted pregnancies for medical reasons. The purpose of the book was to share their stories in the hopes of helping other parents who have undergone a similar loss to feel less alone, less isolated, and less stigmatized.
This book is available on Amazon.com
http://www.amazon.com/Our-Heartbreaking-Choices-Interrupting-Much-Wanted/dp/0595530478
**CHERUBS is not a pro-life or pro-choice organization. Our mission is to help all CDH families and make sure that they have all the information that they need to make informed choices
Thursday, April 30, 2009
Cherubs On Their Way
The following babies are expected soon. They have all been diagnosed with Congenital Diaphragmatic Hernia. Please keep them and their families in your prayers.
Jon Lee S. - Due 2009-04-11
Andrew Lee Whitten - Due 2009-04-17
Gabriela Monteiro - Due 2009-05-14
Avery Mae Keirsey - Due 2009-05-15
Giavanna Digregorio - Due 2009-06-12
Baby Clarketimmins - Due 2009-06-15
James Reeve 2009-06-15
Cameron Zane Redmon 2009-06-20
Baby Price - Due 2009-06-21
Eli Camden Harvey - Due 2009-06-24
Baby Slager - Due 200907-02
Gabriella Morgan Groenewald - Due 2009-07-05
Baby Brogden - Due 2009-07-06
Kamryn Hope Studdard - Due 2009-07-08
Jacob Thomas Zimmerman - Due 2009-07-18
Ireland Rose B - Due 2009-08-23
Jonathan Louis Moehl - Due 2009-09-13
Makayla Jackson – Due ???
Amy Marie Meyers – Due ???
**this is only a list of those cherubs whose parents gave us permission to publish their names. There are many more babies on their way and this list does not include all the many, many newborn cherubs already here.
Jon Lee S. - Due 2009-04-11
Andrew Lee Whitten - Due 2009-04-17
Gabriela Monteiro - Due 2009-05-14
Avery Mae Keirsey - Due 2009-05-15
Giavanna Digregorio - Due 2009-06-12
Baby Clarketimmins - Due 2009-06-15
James Reeve 2009-06-15
Cameron Zane Redmon 2009-06-20
Baby Price - Due 2009-06-21
Eli Camden Harvey - Due 2009-06-24
Baby Slager - Due 200907-02
Gabriella Morgan Groenewald - Due 2009-07-05
Baby Brogden - Due 2009-07-06
Kamryn Hope Studdard - Due 2009-07-08
Jacob Thomas Zimmerman - Due 2009-07-18
Ireland Rose B - Due 2009-08-23
Jonathan Louis Moehl - Due 2009-09-13
Makayla Jackson – Due ???
Amy Marie Meyers – Due ???
**this is only a list of those cherubs whose parents gave us permission to publish their names. There are many more babies on their way and this list does not include all the many, many newborn cherubs already here.
Wednesday, April 22, 2009
Over a half Million Babies born with Congenital Diaphragmatic Hernia Since 2000
This is a still capture of the counter. Pick up the actual functioning counter on our blog at http://cdhsupport.blogspot.com
If you like the CDH stat counter on our blog, you can pick up the blogger / blogspot code at http://www.cdhsupport.org/graphics/cdhstatcounter-blogger.txt
HTML code can be downloaded at http://www.cdhsupport.org/graphics/cdhstatcounter-html.txt
We're still working on coding for Facebook, Myspace, Live pages and Wordpress. If you want to help on that code, please let us know!
In the United States:
There are approximately 6 million pregnancies every year throughout the United States:
* 4,058,000 live births
* 1,995,840 pregnancy losses
1 in 2500 babies is diagnosed with CDH. That means over 1600 babies are born with Congenital Diaphragmatic Hernia EVERY YEAR in the United States Alone.
With a 50% survival rate, 800 of those babies will die.
Today, and every day, at least 4 families will be devastated with the news of CDH.
Worldwide:
The World Census Bureau estimates that in 2008 over 350,000 babies are born in the world every day = 147 babies will be born with CDH every day.
According to the IDB (International Database) from the U.S. Census site, 257 people are born every minute globally. That means that somewhere in the world, every 10 minutes a baby is born with Congenital Diaphragmatic Hernia. Every 10 minutes.
1 CDH baby every 10 minutes.
These numbers add up to over a half million CDH babies since January 1, 2000!
No one knows the cause of CDH.
No one knows how to prevent CDH.
Hardly anyone knows what CDH is unless someone you love has been affected by it.
CHERUBS and the CDH Study Group are the only 2 organizations actively researching Congenital Diaphragmatic Hernia on a global platform. CHERUBS is the only organization offering global support to families of children born with CDH, with members in 38 countries.
What can you do to help?
Raise awareness. http://www.cdhsupport.org/awareness, http://www.cafepress.com/cherubs, http://www.zazzle.com/cherubs
Donate to research. http://www.cdhresearch.org
Participate in events. http://www.cdhsupport.org/members/viewforum.php?f=184
Help support CDH families. http://www.cdhsupport.org
References:
http://www.americanpregnancy.org/main/statistics.html
http://www.worldpopulationbalance.org/pop/metronome.php
http://www.census.gov/ipc/www/idb/
Friday, April 10, 2009
March of Dimes Walk for Babies
Please support Karen Myers as she participate's in March of Dimes Walk for Babies' campaign.
http://www.marchforbabies.org/personal_page.asp?w=111019059&u=kmmyers307
May 16, 2009
200 North Crickett Drive
San Antonio, TX 78226
In Loving Memory of (cherub) Kaleigh 2002 and William 2005
Posted by their mom, Karen:
This will be our family's 5th year to participate in March for Babies for March of Dimes and I am happy to say we have had great success with the help of our family and friends. The March of Dimes has supported research for the birth defect Congenital Diaphragmatic Hernia (CDH) that Kaleigh was born and passed away from. We found out when I was 20 weeks pregnant that she would be born with this devastating birth defect and the Dr.s gave her a 60% chance to live. From the moment she was born (full term on her due date) she faced the fight of her life. She was immediately placed on a ventilator and after 3 days of fighting to keep her stable she was placed on Extra Corporeal Membrane Oxygenation (ECMO) a heart lung bypass machine. She spent 9 days on it then was taken off to have surgery to repair her defect and take her stomach, intestines, spleen and tip of her liver out of her chest and place them back into her abdomen where they belonged so what little lung she had could start to grow and work. Unfortunately on her 17th day of life her body couldn't oxygenate itself even with artificial help due to such immature and malformed lungs and we held our daughter for the very first and last time as her heart stopped beating. She gave us the most precious 17 days and fought with all her might and we love and miss her. Unfortunately our family then had to experience the heartbreak all over again as we learned when I was 27 weeks pregnant that our son William Logan's heart had stopped beating and he was born an angel due to Non-immune Hydrops Fetalis. It broke our hearts knowing he would never know his mommy or daddy's touch. The March of Dimes is wonderful in providing detailed and helpful information for families with children born with birth defects. I know they were a great resource for me and my family. The funds we raise may seem like a drop in the bucket but every little bit counts and hopefully one day I will stop meeting families who have had to endure the heartbreak of loosing a child, whether it be to prematurity, birth defects or illness.
Please join our family by signing up to walk on our team, fund raise for the team or by donating.....we can save babies together.
Love,
The Myers Family
Will, Karen, Alec, Aubrey and Jackson
Remembering Kaleigh and William Logan always........FOREVER OUR SUNSHINES!!
The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.
Thursday, January 22, 2009
(Repost) No One Knows
No One Knows....
by Dawn Williamson
No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.
No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.
No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.
No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.
No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.
No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.
No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.
No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.
No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.
No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.
No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.
No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.
No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.
No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.
No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.
No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.
No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.
No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.
No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.
No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.
No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.
No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.
No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.
No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.
No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.
No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.
No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.
No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.
No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.
No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.
No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.
No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.
No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.
No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.
No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.
No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.
No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.
No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.
No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.
No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.
No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.
No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.
No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.
No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.
No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.
No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.
No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.
No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.
No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.
No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.
No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.
No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.
No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.
No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.
No one knows what it's like to lose your child - unless they have been there themselves.
No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.
No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.
No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.
No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.
No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.
I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.
And I know over 2200 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.
http://www.cdhsupport.org
Friday, December 19, 2008
Monday, December 15, 2008
Videos of Cherubs - Landon Tyler Boothe
We have decided to add a new video to our blogs once a week. If you would like to submit a video, please e-mail us the link to your youtube or video site account to membership@cherubs-cdh.org
Landon Tyler Boothe
Landon Tyler Boothe
Friday, November 21, 2008
Over .5 Million Babies born with Congenital Diaphragmatic Hernia Since 2000
If you like the CDH stat counter to the left, you can pick up the blogger / blogspot code at http://www.cdhsupport.org/graphics/cdhstatcounter-blogger.txt
HTML code can be downloaded at http://www.cdhsupport.org/graphics/cdhstatcounter-html.txt
We're still working on coding for Facebook, Myspace, Live pages and Wordpress. If you want to help on that code, please let us know!
In the United States:
There are approximately 6 million pregnancies every year throughout the United States:
* 4,058,000 live births
* 1,995,840 pregnancy losses
1 in 2500 babies is diagnosed with CDH. That means over 1600 babies are born with Congenital Diaphragmatic Hernia EVERY YEAR in the United States Alone.
With a 50% survival rate, 800 of those babies will die.
Today, and every day, at least 4 families will be devastated with the news of CDH.
Worldwide:
The World Census Bureau estimates that in 2008 over 350,000 babies are born in the world every day = 147 babies will be born with CDH every day.
According to the IDB (International Database) from the U.S. Census site, 257 people are born every minute globally. That means that somewhere in the world, every 10 minutes a baby is born with Congenital Diaphragmatic Hernia. Every 10 minutes.
1 CDH baby every 10 minutes.
These numbers add up to over a half million CDH babies since January 1, 2000!
No one knows the cause of CDH.
No one knows how to prevent CDH.
Hardly anyone knows what CDH is unless someone you love has been affected by it.
CHERUBS and the CDH Study Group are the only 2 organizations actively researching Congenital Diaphragmatic Hernia on a global platform. CHERUBS is the only organization offering global support to families of children born with CDH, with members in 38 countries.
What can you do to help?
Raise awareness. http://www.cdhsupport.org/awareness, http://www.cafepress.com/cherubs, http://www.zazzle.com/cherubs
Donate to research. http://www.cdhresearch.org
Participate in events. http://www.cdhsupport.org/members/viewforum.php?f=184
Help support CDH families. http://www.cdhsupport.org
References:
http://www.americanpregnancy.org/main/statistics.html
http://www.worldpopulationbalance.org/pop/metronome.php
http://www.census.gov/ipc/www/idb/
Sunday, November 9, 2008
Finally the government caught up on something CHERUBS has known for years!
S. 1810: Prenatally and Postnatally Diagnosed Conditions Awareness Act
http://www.govtrack.us/congress/bill.xpd?bill=s110-1810
Several years ago CHERUBS started a movement for better ultrasound technology, information for parents diagnosed with a sick child in utero and support referrals. A parent sent me the link above this morning - Congress finally passed this! How wonderful for all CDH families and families of children born with any birth defect or genetic anomaly! Below is one of the logos that we used back in the day when we petitioned for for this act. We set it aside to work on other things, plus it was getting too sticky (public charities cannot lobby Congress). But isn't it wonderful that it has finally been passed!?
Summary from the site:
10/8/2008--Public Law.
Prenatally and Postnatally Diagnosed Conditions Awareness Act -
Section 3 -
Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.
Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.
Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.
Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.
http://www.govtrack.us/congress/bill.xpd?bill=s110-1810
Several years ago CHERUBS started a movement for better ultrasound technology, information for parents diagnosed with a sick child in utero and support referrals. A parent sent me the link above this morning - Congress finally passed this! How wonderful for all CDH families and families of children born with any birth defect or genetic anomaly! Below is one of the logos that we used back in the day when we petitioned for for this act. We set it aside to work on other things, plus it was getting too sticky (public charities cannot lobby Congress). But isn't it wonderful that it has finally been passed!?
Summary from the site:
10/8/2008--Public Law.
Prenatally and Postnatally Diagnosed Conditions Awareness Act -
Section 3 -
Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.
Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.
Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.
Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.
Saturday, October 25, 2008
No One Knows....
No One Knows....
by Dawn Williamson
No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.
No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.
No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.
No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.
No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.
No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.
No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.
No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.
No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.
No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.
No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.
No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.
No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.
No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.
No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.
No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.
No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.
No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.
No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.
No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.
No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.
No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.
No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.
No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.
No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.
No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.
No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.
No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.
No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.
No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.
No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.
No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.
No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.
No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.
No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.
No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.
No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.
No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.
No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.
No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.
No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.
No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.
No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.
No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.
No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.
No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.
No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.
No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.
No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.
No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.
No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.
No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.
No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.
No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.
No one knows what it's like to lose your child - unless they have been there themselves.
No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.
No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.
No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.
No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.
No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.
I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.
And I know over 2200 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.
http://www.cdhsupport.org
by Dawn Williamson
No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.
No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.
No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.
No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.
No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.
No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.
No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.
No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.
No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.
No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.
No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.
No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.
No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.
No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.
No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.
No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.
No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.
No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.
No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.
No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.
No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.
No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.
No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.
No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.
No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.
No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.
No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.
No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.
No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.
No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.
No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.
No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.
No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.
No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.
No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.
No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.
No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.
No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.
No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.
No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.
No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.
No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.
No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.
No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.
No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.
No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.
No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.
No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.
No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.
No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.
No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.
No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.
No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.
No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.
No one knows what it's like to lose your child - unless they have been there themselves.
No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.
No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.
No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.
No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.
No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.
I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.
And I know over 2200 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.
http://www.cdhsupport.org
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