Wednesday, May 1, 2013

MEET OUR VOLUNTEERS - Shana Kelly

Shana KellyShana Kelly

Shana is mom to Landon Matthew, born June 20, 2008 with an undiagnosed left-sided Diaphragmatic Eventration. Landon had his repair surgery on day three of his life and was blessed to go home after only three weeks at Toronto's Hospital for Sick Children. He suffered from severe reflux and was listed as failing to thrive during his first few months. At four months of age he was admitted to hospital with suspected pneumonia. In fact, it was a right-sided Diaphragmatic Eventration that had allowed his liver to push into his right lung; the lung that was doing the majority of the work for his body as his left lung was underdeveloped. He underwent a second surgery a few days later. After a rough recovery he came home just in time to celebrate his first Christmas and hasn't looked back.

Shana resides in Bobcaygeon, Ontario with her husband, Matt, Landon and his older sisters Skye and Nyah. She is a member of the Professional Golfers' Association of Canada, an amateur photographer and a graphics geek.

Tuesday, April 30, 2013

MEET OUR VOLUNTEERS - Elizabeth Lopez

Lizz LopezElizabeth Lopez

Elizabeth (“Lizz”) was born the youngest of 3 on December 28, 1972 in Burlington, NC. It was immediately obvious that there was something not “right,” since she was dark blue. Four hours later, after being rushed to Chapel Hill, NC to what was then UNC’s Memorial Hospital, under the care of a talented young surgeon who had luckily paid attention in his Pediatric Surgery rotation as a resident, surgery was done to repair the hole in her diaphragm and put all vital organs in their proper places, followed by a 6-week stay in the hospital. Luckily, there were no other complications and Lizz has lived a full and somewhat productive life.

Lizz and her husband Juan are the very proud parents of 3 daughters, all born perfectly healthy.  As an adult survivor who has never known anyone else with CDH until finding CHERUBS, she looks forward to bringing hope to parents of survivors and to grieving parents alike.

Monday, April 29, 2013

MEET OUR VOLUNTEERS - Ashley McCafferty

Ashley McCafferyAshley McCafferty


Ashley, mom to 2 wonderful boys Brycen and Logan.

My youngest, Logan was diagnosed at 20 weeks gestation with left-sided CDH and was born 10-14-11 at St. Luke’s Hospital in the Texas Medical Center here in Houston. Immediately after birth, Logan was transferred to the Level 3 NICU at Texas Children’s Hospital. While in the NICU Logan was a fighter and amazed everyone on how well he was doing. After 3 weeks in the NICU we were able to bring our sweet baby home without any additional medical problems, machines, or medications! Since coming home Logan has had one other surgery due to a bowel obstruction caused by scar tissue. Logan is a completely happy and healthy little boy that has brought so much joy to our family.
I found CHERUBS shortly after my 20 week ultrasound when I first started researching CDH. I am truly grateful for CHERUBS and all the information and support they have provided my family.

I am currently a Hospital Angel for Texas Children’s Hospital in Houston.

Friday, April 26, 2013

MEET OUR VOLUNTEERS - Shankari Murali


Karen MyersShankari Murali

Shankari is mum to my miraculous cherub, Anugrah Murali, born with Left CDH and pectus on 20th January 1999. He was born in a Delhi hospital and his defect was diagnosed at birth.  The pediatrician shifted him immediately to Indraprastha Apollo hospital where he had his repair on the 3rd day of his life. [Given the number of babies born in India, CDH is not strange or unknown among pediatricians. Repairs are undertaken in most large hospitals but eventual outcomes depend on both surgical intervention and post-op care, which was luckily excellent in Anugrah's case.] At two years of age he developed a serious problem of intestinal adhesions and volvulus which required an even more difficult and critical surgery. He was lucky again to have  the same excellent ped. surgeon, Dr BD Dwivedi. He had yet another surgery for inguinal hernia soon after. Since then, he has overcome all the developmental issues and is one happy, healthy young boy.

Shankari lives in Bangalore with her two delightful children Aishwarya and Anugrah and their golfer dad, Murali. She is the India rep. of CHERUBS and works for the government of India.

Thursday, April 25, 2013

MEET OUR VOLUNTEERS - Karen Myers

Karen MyersKaren Myers

Hello, my name is Karen Myers, and I am the mother to Kaleigh Marie who was born on 30 July 2002. She was born at Wilford Hall Medical Center, in San Antonio TX, after learning at 20 weeks gestation she would be born with a left sided Congenital Diaphragmatic Hernia. She spent 10 days on ECMO and had her CDH repair on her 15th day of life. Unfortunately she passed away when she was 17 days old. I am also the mother to another angel, William Logan, who was stillborn on 26 May 2005, at 27 weeks gestation, due to non-immune hydrops fetalis. After much testing and genetics couseling it was deemed that there was no connection between the CDH and Hydrops.

I have 3 other beautiful children. Alec, who is 20 and off at college. Aubrey, who is 9 and going into the 4th grade and Jackson, who will be 4 and starting Pre-K soon. I also have a wonderful husband, Will, who is active duty Army and I am a stay at home mom. We currently reside in Crestview Florida but move when the Military says so. I have been a member of CHERUBS since finding out about Kaleighs CDH and wouldn't be the somewhat sane person I am today with out all of the volunteers love and support over the years as well as all the wonderful parents I have met along the way who journey through this horrible defect together.

Wednesday, April 24, 2013

MEET OUR VOLUNTEERS - Aubrey Paulsen

Aubrey PaulsenAubrey Paulsen

My name is Aubrey Paulsen and I live in Nebraska with my husband Mike and our two sons; Owen, 3 ½ and Christian who will celebrate his 1st birthday in July. At 20 weeks pregnant with Christian we were sent to a high risk doctor for an ultrasound to look for a cleft palate. Owen was born with Pierre Robin Sequence, which is characterized by a small chin and cleft palate. Our baby did not have a cleft palate but was rather diagnosed with a cyst on his lung. Several weeks and ultrasounds later the diagnosed changed to that of CDH and so the journey of our lives began.

Christian was born July 18, 2011 at 38 weeks with a very large left sided defect. He was placed on ECMO on day 2 where he remained for 15 days. On September 30, 2011 after 12 weeks in the NICU at The Nebraska Medical Center we brought Christian home. We struggle with weight gain, battle reflux and have some issues due to his anatomy but he has made great improvements with feeding and I predict he will continue to do so.

I am new to CHERUBS but am excited to grow into the role of Nebraska State Representative. I believe that for me the only way to make peace with this experience is to support families, raise awareness and advocate for research.

Tuesday, April 23, 2013

MEET OUR VOLUNTEERS - Darlene Silverman

Darlene SilvermanDarlene Silverman

Darlene has been a member of CHERUBS since 1999 and a Board Member and Secretary for the past few years.  

She has an A.A. Degree from Montgomery College in Maryland.  She has worked as a Legal Assistant/Secretary since 1974 at numerous law firms whose primary practice was litigation and medical malpractice defense.  She has raised 5 children and has 8 grandchildren (first grandchild born in 1998 with LCDH). 

MEET OUR VOLUNTEERS - Molly Echelbarger

Molly EchelbargerMolly Echelbarger


Molly is the mom of Joshua Angel (3/30/10 - 3/31/10).  Joshua was born with left-sided CDH. He was diagnosed at 20 weeks gestation. His stomach, intestines, and liver were in his chest. His intestines pushed his heart to the right side. He had heart problems, hydrop fetalis/polyhydromnious (fluid retention in the abdomen) as a result of heart failure, and was born premature.  At birth, he had two cardiac arrests and developed a collapsed lung, or pneumothorax.  Joshua lived for 12 hours.

Molly is the California State Representative. She has been married for 9 years. She has two children; Gabriel 7 years old, and Bethany 3 years old.  She studied Social Services and Sociology.  She is currently a stay-at- home mom, and plans to go back to school. She enjoys helping those in need, singing, photography, and doing volunteer work in her community.

Molly is a navy wife and stay-at-home mom.

Wednesday, April 17, 2013

MEET OUR VOLUNTEERS - Tracy Meyer


Karen MyersTracy Meyer

Tracy Meyer is the proud mother of Lillian Sophia, born on June 7, 2011 at North Shore Long Island Jewish Hospital (Stephen & Alexandra Cohen's Children's Medical Center).  Tracy found out that Lily was diagnosed with left-sided CDH during her 36-week sonogram.  With the love and support that was given to the Meyer family, Lily proved the world that she is a fighter and there is hope. After a successful surgery 3 days after she was born (which was performed laparoscopically), Lily was in the hospital for almost 2 weeks and came home on Father's Day. Known as the “miracle angel,” Lily still amazes everyone to this day how strong of a fighter she is.

Tracy resides on Long Island, New York with her husband, Christopher. She has been a CHERUBS volunteer for New York since June 2012. Tracy has a BS in Accounting and AS in Computer Science and has been working in the accounting field since 2003 working in audit and tax. Whether it’s at the eastern end of Long Island at the wineries or having a get together at home, Tracy loves spending time with friends and family.

Tuesday, April 16, 2013

MEET OUR VOLUNTEERS - Elaine Moats

Elaine MoatsElaine Moats


Hello, my name is Elaine. I am a mom to two wonderful girls and wife to Brett. My oldest daughter was born with CDH. She was born in 1992. We did not know about the CDH until she was born thankfully because we would of been told to abort her. They did not expect her to live. That was how it was back then and because of where we were from and the doctors lack of experience with CDH, etc. She had her hernia repaired at one day old, her nissen done at 3 months old, her hole in her heart closed at 1 year old, she was oxygen dependant till age 2 1/2, she was g-tube dependant till age 4 1/2, and she had many developmental delays. She had clear sailing until her bowel obstruction at age 14. She amazes me how far she has come and how much she has had to endure. Kristin graduated High School in 2011 with honors, a member of the National Honor Society and ranked #19 in her class of over 200. Kristin was also on the varsity tennis team, on the varsity cheerleading team, in the top girls choir, and made it to State 2 years singing a solo. Outside of school Kristin loves her dance and clogging classes. All of this with only one functioning lung :) As I write this (2012) Kristin has finished her first year in college and I am happy to say she has excelled in college just like high school. My youngest daughter, Brittany, is just as amazing. I smile when I tell them they both like to make GRAND entrances. Kristin, with her CDH being a surprise and Brittany, with being born 2 months early while we were on vacation in a town of 200. Oh and by the way she was breech and I delivered her naturally in a rest home :) So my claim to fame is having 2 amazing girlies :) I have been lucky enough to be a stay at home mom up until 2 years ago. At that time I joined the work force and became an aide in Special Ed in our local K-3rd grade school. Oh what fun I have had helping these kids. In my spare time I like to read, crochet and watch my family in whatever sports event they are in.
CHERUBS has been part of our lives since 1993. I don’t know where I would have been emotionally without CHERUBS. It has been my lifeline for CDH. You have to realize in 1992 there was not all the technology available to connect us all. We have met many wonderful parents here.