The Alliance of Congential Diaphragmatic Hernia Organizations

Congratulations to Jana Lewallen, new Chairperson of ACDHO!

http://www.acdho.org

The site is still under construction, there are a lot of new CDH groups to add and guidelines to tweek but we are so excited to have a new Chairperson and new site!  ACDHO is a wonderful group and a huge asset to the CDH community.  Through it's members, it gives parents a wealth of accurate information and compassionate support, builds research and awareness collaborations and offers CDH families and researchers a source of safe and positive referrals.

The member list is under construction - lots of new groups will be voted on and added.   Those listed are either members, have been invited or will be voted on ASAP.    To suggest a group, please visit the web site.

Members of ACDHO can bear the following distinguishing seal:

Yes, it's just a graphic but it can be beacon of hope and trust to CDH parents searching for support and accurate information.   After all the CDH community has been through the past few years with trademarks and drama, all CDH families need a safe place to turn to made up of people and groups that they can trust in, participate in, support - without adding worry to the stress that they are already dealing with with Congenital Diaphragmatic Hernia.

ACDHO is a group of people who want to work together in a professional and productive manner.   Who put the entire CDH community first.  It's members include CDH Researchers - including all the world's best CDH researchers by membership through their research hospitals or through Medical Advisory boards of ACDHO's charity members.  It also includes CDH charities and groups who wish to work together to help families affected by Congenital Diaphragmatic Hernia.

This is a new decade and new CDH community - a grown up CDH community without behavior that's detrimental to the cause we should all be supporting.  The members of ACDHO have turned their heads away from the negativity and look forward to a bright future of shared common goals in a positive environment.

CHERUBS looks forward to working with the researchers, charities and groups in ACDHO and being a part of something full of hope and promise for the whole CDH community.

"Leadership is not magnetic personality — that can just as well be a glib tongue. It is not "making friends and influencing people" — that is flattery. Leadership is lifting a person's vision to higher sights, the raising of a person's performance to a higher standard, the building of a personality beyond its normal limitations" - Peter Drucker


Mission Statement:  The Alliance of Congenital Diaphragmatic Hernia Organizations is a group of CDH charities, sites and researchers working together to bring support, research and maintain integrity in the CDH Community.

The organizations and people in ACDHO strive to help babies and families affected by Congenital Diaphragmatic Hernia by offering research, support, funds or other services with positive, productive and professional working relationships within the CDH community.

ACDHO members are chosen for their integrity and the respect that they show to CDH families and other organizations and most of all, for their desire to work as one community keeping the best interests of CDH babies at the forefront of all services.

ACDHO has a new leader and a new site, along with the "ACDHO Seal of Integrity" so that CDH parents will know which groups have their best interests at heart and which hospitals have an expertise in CDH care.

Stay tuned for more information!

Surgery in womb helps save baby

An article in today's St. Louis Post-Dispatch that CHERUBS is proud to be a part of.   In 2009 CDH parents in St. Louis raised money to help their hospital with CDH Research.   They succeeded and this article is proof of these families' good work in memory of their cherubs.

 

Surgery in womb helps save baby

By Michele Munz

ST. LOUIS POST-DISPATCH

01/28/2010

 

Ali Davis, just after his mother, S’ala Davis, gave birth by Caesarean section Friday at Cardinal Glennon Children’s Medical Center. Ali Davis had an experimental surgery while still in the womb for a condition called CDH. (Cardinal Glennon Children's Medical Center)

St. Louis has joined a handful of cities nationwide performing a rare and somewhat controversial surgery on a fetus with an undeveloped diaphragm, a life-threatening condition that allows organs to float into the chest and severely restrict lung growth.

The baby that had the fetal procedure — Ali Davis — was born Friday at Cardinal Glennon Children's Medical Center, the first to be delivered at the pediatric hospital because he needed immediate access to a heart-lung machine. To everyone's surprise, Ali's oxygen levels were high enough that he did not need the machine for his first five hours.

"The fetal operation may have caused these changes and ultimately may lead to survival," said surgeon Dr. Ed Yang, co-director of Cardinal Glennon's Fetal Care Institute, which opened last summer.

The operation was also ground-breaking for fetal surgery because Yang experimented with using a gel instead of a balloon to help the lungs grow, which Yang hopes will prove less risky.

It was a procedure Ali's mother, S'ala Davis, 26, of St. Louis, was willing to try. "I'd rather someone take a chance and try to save my son's life than to have not tried at all," she said.

At 20 weeks gestation, an ultrasound revealed that Ali's lungs were virtually undetectable. His liver, a solid organ, was in his chest. Ali had a severe form of congenital diaphragmatic hernia, which occurs in about 1 in 2,500 babies and is more common than spina bifida, muscular dystrophy or cystic fibrosis.

CDH varies widely in severity and outcomes. In best cases, infants do well with surgery after birth. In the worst, babies survive only days. The national survival rate is about 50 percent, according to the Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support.

Yang believes with fetal surgery, he is offering an alternative in cases with little hope.

The surgery — called tracheal occlusion — involves using a tiny scope to place a balloon in the baby's airway, trapping fluid in the lungs and forcing them to expand. That balloon, however, must also be removed in a second surgery before the mother goes into labor. Each surgery increases the women's risk of delivering prematurely. A 2003 study shows that because of this risk, tracheal occlusion does not improve survival rates.

Yang believes blocking the airway with a gel that dissolves after about four weeks will result in better outcomes. "It's new. It's risky," he admits. It requires moms such as Davis willing to be a part of research. "They are doing this for future babies," Yang said. The hospital paid for the surgery, he said.

CRITICS QUESTION OPERATION

Some, however, question the science used to predict which babies with CDH will do poorly. "We lose babies with good predicted outcomes, and we see survivors among babies with horrible predicted outcomes," said Dr. Brad Warner, chief pediatric surgeon at St. Louis Children's Hospital.

Before coming to St. Louis, Yang studied at three fetal surgery centers and directed the fetal program at Vanderbilt Children's Hospital in Nashville, Tenn. He studied CDH cases closely, he said, and feels confident that with a variety of tests, he can accurately predict which babies will likely die.

The gel helped Ali's left lung to grow significantly, but not the right. More may have been needed, Yang said. Ali's prognosis is unknown, but his first few hours give his mom hope. "He came out fighting," Davis said.

Another great article about Ali and this procedure is here:

http://www.cardinalglennon.com/News/Pages/FirstBirthatCardinalGlennonaSuccess.aspx

Prayers & Quotes for January 26, 2010

Prayers & Quotes for January 26, 2010

If you have a prayer request for a cherub or a family member of a cherub, you can send it to prayers@cdhsupport.org.


Please keep the following in your thoughts and prayers:

Cherub angel Katie (Kathryn) R.'s mom AnneMarie R. is in need of prayers. She recently lost her son, newborn Joshua, to a cord accident on 1/21.

Cherub angel Jeremiah D.'s mom Sarah is expecting a baby any day now and her husband Jerry B. needs prayers for he has appendicitis and a twisted bowel and is in the hospital.

Cherub angel Maxton S.'s mom Ashley is expecting a baby!

Cherub Jacob G. is home from the hospital after a scary month recovering from pneumonia and complications. He still has further medical issues to address and needs our prayers.

Newborn cherub Ciaran B. went home on 1/19!!

Newborn cherub Ruby W. went home on 1/19!!

Cherub Ethan H. is having a rough time recovering from his reherniation surgery on 12/15. He still is in an inpatient rehab program and working on getting stronger daily.

Cherub Zoe L. had to be readmitted back to the hospital for a few days, but now is back home. Prayers she gets over her illness soon.

Newborn cherub Molly G. is off ECMO, prayers her body can do the work.

To all our families and friends that are fighting against the flu, colds, sickness…may you feel better soon and have no complications.


Cherubs on Their Way:

Cherub Noah A., due 5/30

Cherub Ian H., due 4/26

Cherub Jayden G., due 3/18

Cherub Jeremiah M., due 3/30

Cherub Mekhai R., due 3/17

Cherub baby boy Ruben, due 2/24

All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead.


Newly Grieving Families:

Cherub Jaden M. and family, grew his wings on 1/20

Cherub Enrique A. and family, grew his wings on 1/11

To all families affected by CDH and the loss of your precious child, may you find peace and comfort and know you are never alone, for so many people care about you.


Today’s Quotes:

"Children remind us to treasure the smallest of gifts, even in the most difficult time." -Allen Klein

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." -Christopher Reeves

"If you have reached the end of all the light you know, and you are about to step into the darkness unknown, Faith can do one of two things...Either you will step onto solid ground or you will be taught to fly." -Author Unknown

These are my Footprints - Author Unknown
"These are my footprints,
so perfect and so small.
These tiny footprints
never touched the ground at all.
Not one tiny footprint,
for now I have wings.
These tiny footprints were meant
for other things.
You will hear my tiny footprints,
in the patter of the rain.
Gentle drops like angel's tears,
of joy and not from pain.
You will see my tiny footprints,
in each butterflies' lazy dance.
I'll let you know I'm with you
if you just give me the chance.
You will see my tiny footprints,
in the rustle of the leaves.
I will whisper names into the wind,
and call each one that grieves.
Most of all, these tiny footprints,
are found on Mommy and Daddy's hearts.
'Cause even though I'm gone now,
We'll never truly part."

CHERUBS Valentine's Day Fundraiser - Raise CDH Awareness and money for a good cause while honoring your cherub

Please participate in our Valentine's Day CDH Awareness!

We have an EASY way to get all of us involved in raising awareness and research funds!!!! Our Valentine's Day fundraiser will take just a few minutes of your time and it will educate so many people about CDH!!!!

Many stores sell awareness posters for $1 each for different causes throughout the year - we're going to sell ours during Valentine's Day - cherubs, angels, cupid, etc - get it? 

We can post these anywhere that we can get permission to post them - grocery stores, schools, gas stations, banks, small stores, department stores, churches, etc. 

Below are 2 files - 1 about the fundraiser to post at the location, 1 that is the actual fundraiser. 

http://www.cdhsupport.org/fundraisers/valentinesdayinfo.doc
http://www.cdhsupport.org/fundraisers/valentinesday.doc


You will need MANY of the actual fundraising posters to sell. Most will make copies for you, some you have to provide yourself - black and white is ok. On pink paper is even better. You only need a few of the fundraising info sheets - most post 1 at each cash register. This tells about CDH, has a CDH diagram cherub and you can post your cherub's photo and name. People waiting in line will see these - we will be reaching 1000's of people!!!!


Everyone is welcome to participate! Help CHERUBS to raise awareness and research funds for Congenital Diaphragmatic Hernia! It's easy, only costs a few dollars to do and you can do it in honor or memory of your cherub while educating 1000's about CDH!

Last year, several of our members convinced their local stores to sell Valentine's Day posters in honor / memory of their cherubs to raise money for CHERUBS. Below are photos from just a few of these fundraisers! The photos below are fundraisers in memory of Caleb Cox and in honor of Logan Wagner.

The best thing about this fundraiser is they raised TONS of Congenital Diaphragmatic Hernia Awareness!!!! Along with the "valentines" displayed were posters explaining what CDH is! Thank you to all the families, friends and establishments that made our first annual CHERUBS Valentine's Day Fundraiser a success!!!

Prayers & Quotes for January 14, 2010

If you have a prayer request for a cherub or a family member of a cherub, you can send it to prayers@cdhsupport.org.


Please keep the following in your thoughts and prayers:

Newborn cherub Jaden M., arrived 1/5. He has been put on ECMO. Mom Jamie is having complications from her c-section and needs our prayers for healing and strength.

Cherub Jacob G. is in the hospital recovering from pneumonia. He is off the vent, but is still struggling to get back to his normal self.

Cherub Logan W. and family had a bad fire on 1/5 that destroyed their garage, vehicles, and belongings. During the fire, a family friend, Daniel M. was helping clear the garage when he suffered a heart attack and passed away. Please keep Logan, Shane, Kevin and Barbara W. and Daniel M.'s family in your prayers during this very difficult time.

Newborn cherub Ciaran B. is off the vent and working on feeds and oxygen weaning.

Newborn cherub Ruby W. is vent and med free and working on feeds.

Cherub Ethan H. is having a rough time recovering from his reherniation surgery on 12/15. After 3 weeks he is off the vent, but still having medical issues and has been transferred to an inpatient rehab program.

Cherub Carter M. is recovering from RSV and bronchiolitis .

Newborn cherub Lewis B. is home after spending 60 days in the hospital!!

Newborn cherub Joshua L. is home after spending two months in the hospital!!

Newborn cherub Zoe L. came home on New Year's Day and joined her twin sister Sadie L. at home!!

Cherub Harleigh S. had a Gtube surgery on 1/13.

Cherub Ruby S. is sick and needs our prayers.

Cherub Ariana G. is recovering from pneumonia and the croup.

Cherub Holly G. has reherniated.

Newborn cherub Molly G. is on ECMO and has had her surgery repair. Molly was born on 1/4.

Cherub Adam H.'s grandma had a mastectomy, but during the surgery doctors discovered the cancer has spread to her lymph nodes. She now has Stage 2 cancer. Please continue praying for her.

Cherub Charlie is having his 26th surgery on 1/14 (however not related to CDH). Charlie is a 26 year old LCDH survivor!

To all our families and friends that are fighting against the flu, colds, sickness…may you feel better soon and have no complications.


Cherubs on Their Way:

Alicia G., mother to cherub Jayden G. (due 03/18/10) got home on 12/31/09 after 5 days in the hospital from a pulmonary embolism (blood clot in the lung). Jayden did just fine all week & an ultrasound during her hospital stay showed some additional lung growth (yea!). Mom will be on blood thinner shots twice a day until after delivery & new blood pressure medicine to keep her heart condition from worsening. Please keep both in your prayers!

Cherub Jeremiah M., due 3/30

Cherub baby boy Ruben, due 2/24

Cherub Mekhai R., due 3/17

All families expecting a baby with CDH, may you have continued hope and strength for the journey that lies ahead.


Newly Grieving Families:

Cherub Enrique A. and family, grew his wings on 1/11

To all families affected by CDH and the loss of your precious child, may you find peace and comfort and know you are never alone, for so many people care about you.


Today’s Quotes:

God Sent to Me an Angel - By Paul Dammon (I found this poem on a CDH blog this past week)

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
"How could God do such a thing?"
When I asked the Father
why He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."
"My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the care
of those who know my mercy,
those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and you don't know what to do,
remember, I am with you,
love is all I ask of you."

"Life is not a matter of milestones, but of moments." -Rose Kennedy

"Faith is taking the first step even when you don't see the whole staircase." -Martin Luther King Jr.

"Congenital Diaphragmatic Hernia Awareness" trademark and CDH Summit Update

Several weeks ago, CHERUBS put out an olive branch to try to end the turmoil surround the trademark on CDH Awareness and all the ensuing drama, slander and juvenile behavior that has plagued our community so that we can all move forward and focus all of our time, efforts and resources towards helping families affected by Congenital Diaphragmatic Hernia. 

CHERUBS is very disappointed to report  that the trademark settlement / peace conference / CDH summit will not take place.

Breath of Hope, Inc has decided that they will not attend any meetings to discuss the trademark and other issues.  They do not want to work together and do not wish to discuss any common goals to work positively for the CDH community and that they still want to retain the trademark.  

This is the last of several attempts that CHERUBS has made to try to bring peace to the CDH community and to protect all CDH families right to raise awareness.  Every attempt has been denied.

As a goodwill gesture, we have offered not to contest their trademark on Congenital Diaphragmatic Hernia Awareness Day and let Breath of Hope have their day and their proclamation without our CDH parents participating at all to avoid more drama, threats and attacks.  Even though that trademark and the proclamations are being used in their argument that only Breath of Hope should be able to use the phrase Congenital Diaphragmatic Hernia Awareness.   We simply as that the trademark on Congenital Diaphragmatic Hernia Awareness be removed and all charities, groups, researchers and families be free to raise CDH awareness in peace.  Elizabeth Doyle-Propst is not open to any negotiating.

This is very disappointing because it is in the entire CDH community's best interests for all CDH groups to work together for the common good.   We extend our apologies and regrets to all those affected by this trademark and this drama.  We tried but we have failed to put an end to this nonsense.

We have already had several complaints and issues filed against us again in the past few weeks in regard to our volunteers using the phrase "Congenital Diaphragmatic Hernia Awareness" without permission of Breath of Hope, Inc.   We also received an "anonymous" threat that we will be reported to the IRS if we try to lobby a Congressional Bill against the trademark - a threat that seems is not empty. 

Also in the past few weeks, an inaccurate blog posting that "CHERUBS is suing" Breath of Hope was posted by that group.  This is not true and is a twist of facts.   Breath of Hope, Inc filed to own a trademark on "Congenital Diaphragmatic Hernia Awareness" and then began to subject CHERUBS to various company complaints, federal complaints, state complaints, etc.

We have no choice but to continue the fight against the trademark on "Congential Diaphragmatic Hernia Awareness" to protect our organization and the entire CDH community.   We will also continue to work on the Congressional Bill to help protect all causes from this type of corporate greed.

Way back when...

CHERUBS is almost 15 yrs old. 15 years old in February. Wow! We have achieved so much over the years. Some parents remember what it was like to have a CDH child 15 yrs ago - there was NO SUPPORT. No information. No organizations. No internet. No library books that explained things. No help from any other organization for birth defects. No nothing. You were alone, without information, without support, trying to stay afloat in all the CDH lingo and stress.

When my son was born the doctors gave me little information. Let's just say his surgeons he had the first yr of his life did not have very good bed side manners. Any information that I had, I either learned from the nurses, respiratory therapists, another CDH mom, neonatalogists or in the medical library myself. I used to lug a diaper bag around the hospital - not full of baby supplies because my baby was lying in intensive care - but full of research articles that I copied out of medical journals in the library. I was in Duke's medical library so much I had a library card, knew the staff and knew which computers and copiers worked the best. Some days that diaper bag would be so full I could barely carry it. I'd unload the research articles on a tray table beside Shane's hospital bed, pull out a highlighter and go through each one finding information.... all while he slept beside me drugged up on Fentanyl or Morphine or any number of painkillers and sedatives while he was recuperating from surgery or a complication.

It was in these medical journal articles that I learned that despite the surgeon's claims that there was only 1 pediatric trach made in the entire world and we had to use it, even though it was causing a stoma so large in my son's throat that you could see his esophagus and we had to pack and pack gauze in the wound while he cried (under sedation) because it hurt so bad - that there was indeed more than 1 trach manufacturer for pediatrics.

It was in these medical journal articles that I learned that it was completely absurd to use tissue from a pulmonary sequestration to try to repair a hernia because NO ONE HAD EVER DONE IT BEFORE... before it had been done on my son, when I was 19 and he was 3 days old and I didn't know to say no. I didn't know because I had no information.

It was in these medical journal articles that I learned that CDH is as common as cystic fibrosis and spina bifida. I learned about recessive genes and possible links to CDH. I learned about Cornelia de Lange Syndrome when the doctors thought Shane might have had it (he didn't). I learned about using abdominal wall muscle to repair CDH and presented the surgeons with printed articles when they said I was crazy for suggesting it.

I learned and I read and I studied and I learned some more. When Shane came home from the hospital, I continued to learn and read. I signed up for classes at the local community college for medical terminology, biology and anatomy so that I could learn more. I took alternative courses at UNC for genetics and embryology. I learned what epidemiology was and gained a passion for it.

I learned to get Shane a new surgeon - and I did and she was and is amazing, and is still on our Board at CHERUBS, along with many other surgeons and nurses and epidemiologists that I met in my research over the years. I am so proud to say that our Medical Advisors and conference speakers are the best in the world!

I took all this knowledge... though in the grand scheme of CDH, it's just a drop in the bucket because no one knows all there is to know about CDH still.... and together with another CDH mom, started CHERUBS. Not because we wanted support. Not because we wanted to make our own cherub's saints or immortalized or put on pedestals. Not because we wanted recognition or to make friends or be popular... because that's not our personalities and because that didn't even exist in the days of writing letters through postal mail. But for 1 reason - because we didn't want other families to go through CDH alone and without information.

We met more CDH moms and together we took our combined knowledge and we compiled CHERUBS Congenital Diaphragmatic Hernia Research Surveys - by hand. This knowledge bought us to conferences around the country, bought CHERUBS to the CDH Study Group table. This knowledge is what created CHERUBS.

This knowledge is something that parents should have at their disposal without having to go through all I did to gain it, or all Rhonda did to gain it. That is what CHERUBS is for.

15 yrs ago there was no internet. Our organization was started by writing letters, 1000's of letters. You did not get immediate responses like today's e-mail - you sometimes waited months. You did not have information within seconds through Google - you drove to a library and you found it in a book.

12 yrs ago CHERUBS went on-line. Our first web site was a year later. There was no free web site software, there was no myspace or facebook. Google wasn't around yet. You had to hand code html to create a web site. You had to search and search for CDH families to build an on-line support group. There was no free software or blogs to help. There were no other support groups to join and learn from and get members from to start our own. We were pioneers.

We worked hard. We created our site. We added 100's of pages of information for CDH families. We lost countless hours with our families and cherubs to put all the on-line resources together for other CDH families. We learned what a chatroom was. How to use search engine optimization. How to install a database. We learned how to create graphics and a logo and our own site template. We started our listservs on Yahoo in 1998 and then upgraded to forums, which are safer and more user friendly. By trial and error, we learned. With no one to teach us, we learned.

Now, in 2010 there are many support groups. Anyone who can create a free blog or listserv or Facebook page and fill out a form on the IRS site with free software can create a non-profit support group. How amazing it is that so much has changed and how I wish it had been that easy for us! Now organizations are taking all CHERUBS has done and our groundwork and building off of it... furthering our cause. Learning more about CDH. Helping more CDH families. Some have said that we haven't gone far enough in 15 years - but we stared with nothing, we laid the foundation, we broke ground - and we are still working, still building, still doing new things every year. We are still leading the way and inspiring others.

How far we all have come..... how far CHERUBS and the CDH community has come in 15 years. Happy Birthday CHERUBS!!!!

We will not stop until there is no longer a need for CDH information, support or awareness - because CDH no longer exists.