- Posted December 30, 2012 by
Wake Forest, North Carolina
Families Raise Money for Research Against Deadly Birth Defect, Congenital Diaphragmatic Hernia
CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) awarded their first $10,000 research grant in 2011 to the CDH Genetic Lab at Massachusetts General Hospital. They hoped to double that amount in grants in 2012 and with the help of charity members they reached that goal.
For many months during the summer and early fall, members of the charity raised money by selling 50/50 raffle tickets. They were able to raise $9,030 for research and a $9,030 raffle prize that was awarded at their annual Masquerade Ball in Raleigh on October 20th to local citizen, Mark Stamper. Combined with donations the charity had their first $10,000 grant.
“Our Vice-President, Ashley Barry, came up with the genius idea to allow our members to vote on who would receive the grant through a contest on Facebook. This allowed the families to participate in the decision making and relieved our Board of having to make such a difficult choice between so many wonderful research institutions. It also helped us to raise a large amount of awareness of Congenital Diaphragmatic Hernia through social media” says CHERUBS President and Founder, Dawn Torrence Williamson.
Raise awareness they did with hospitals competing for votes by posting to 1000’s of their own Facebook fans and sending out e-mails to their mailing lists asking for votes. CHERUBS Facebook page reached close to 11,000 fans and 2,000 people shared the contest poll.
“Over 8,000 people voted in our little contest” says Williamson. “It got very heated between 2 hospitals when they started shifting between first and second place over the final 2 days. E-mails were flying, posters were being hung up all over towns, 1,000’s of Facebook statuses were asking for votes. Families are very loyal to their children’s surgeons and hospitals and you could see that reflected in the voting. I think all of us were on pins and needles until the very end”.
In the end, The Center for Fetal Diagnosis and Treatment at CHOP (Children’s Hospital of Philadelphia) won with 3,474 votes to Shands Hospital for Children’s 3,380 votes.
Also in the contest were St. Louis Fetal Care Institute, UCSF Fetal Treatment Center, the Congenital Diaphragmatic Hernia (CDH) Genetic Research Study at Massachusetts General, DHREAMS Research Study (Congenital Diaphragmatic Hernia) at Columbia University, Baylor University Medical Center at Dallas and Boston Children's Hospital. All centers world-renowned for their research on Congenital Diaphragmatic Hernia.
The charity added some suspense to the mix with the announcement that another research facility will also win $10,000, making that $20,000 going to CDH Research.
“One of our members, the family of Tatum Ashley Larson, did an extraordinary thing this year. They raised over $10,000 on their own through donations to our charity in her memory. They requested that DHREAMS receive a grant and we are honored to be a part of this generous gift to help other babies born with CDH” says Williamson.
Tatum’s family released the following statement; “After 9 months of excitement and anticipation Tatum Ashley Larsen was born on September 14, 2012. When she was born, she opened her eyes and looked at us but then she didn't cry. Unbeknownst to us, she suffered from Congenital Diaphragmatic Hernia. She was born at 1:14pm and passed at 2:15pm the same day. She weighed 5.9 pounds and was 18 3/4 inches. We have raised over $10,000 in her honor for CHERUBS and are excited to have this money be donated in her name to the DHREAMS research foundation at Columbia, where we hope a cause will be found for this defect. This donation gives her such purpose in this world and helps give us peace.”
The charity hopes to present both facilities with ceremonious large checks during events on the International Day of Congenital Diaphragmatic Hernia Awareness on April 19th, even though the cashable research grant checks will be on their way on December 31st, ending an incredible year for CHERUBS.
“In 2012 we marched on Capitol Hill and in 7 other large cities on April 19th, we introduced Senate Bill S.3396 with Senators Jeff Sessions (R-AL) and Ben Cardin (D-MD), sent out over 300 care packages to families of newborns with CDH, held an international conference for families in San Francisco and so very, very much more. We are very blessed with wonderful members and volunteers. 2012 has not been a bad year for our grassroots charity with the nickname ‘the little charity that could’, run on a shoe-string budget and loves of determination. Never underestimate parents working hard to save the lives of their children” – says Williamson.
The charity will be raising money for many different research centers in 2013 on April 19th with Parades of Cherubs at several hospitals and a national fundraiser.
CHERUBS will 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.
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 December 2012, CHERUBS has over 4200 members in all 50 states and 54 countries. Board Members include local business owners, the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH.
About The Center for Fetal Diagnosis and Treatment at CHOP (Children’s Hospital of Philadelphia)
Since its start in 1855 as the nation's first hospital devoted exclusively to caring for children, The Children's Hospital of Philadelphia (CHOP) has fostered medical discoveries and innovations that have improved pediatric healthcare and saved the lives of countless children.
Experts from many areas of CHOP are dedicated to providing the very best medical and surgical care for congenital diaphragmatic hernia (CDH), and perform basic, translational and clinical research to improve the outcomes and lives of those affected by CDH The Center for Fetal Diagnosis and Treatment at CHOP is the world’s largest fetal diagnosis and treatment program and sees families from all 50 states and over 50 countries., The Center has cared for more than 13,000 patients with a prenatally diagnosed birth defect like CDH.
CHOP is home to the Garbose Family Special Delivery Unit, the world’s first birth facility exclusively dedicated to mothers carrying babies with known birth defects like CDH. This Unit is paramount for mothers carrying CDH babies, as it avoids a transport of their baby who are known to be sensitive to movement and noise. Importantly, the SDU keeps moms and babies together after delivery during this critical time. The SDU provides the highest level of immediate care for the newborn, as well as expert obstetric services for the mother — all within the same pediatric hospital.
Once stabilized, the baby is transported to the Newborn/Infant Intensive Care Unit (N/IICU), where a team dedicated to surgical babies like those with CDH continue to evaluate and carefully monitor the newborn’s condition. CHOP’s ECMO program, one of the largest in the US has provided ECMO support for nearly 150 babies with CDH since 1991. Babies with severely compromised or fragile lungs may require ECMO (Extracorporeal Membrane Oxygenation).
Many children with CDH are born with pulmonary hypoplasia, a condition characterized by small, underdeveloped lungs that affect not only breathing, but also heart function, ability to feed and overall development. CHOP has created a unique Pulmonary Hypoplasia Program (PHP) that provides comprehensive, interdisciplinary care specifically focused on this challenging condition. The Program follows children from infancy to high school. The Program currently follows more than 350 children and provides coordinated clinical care, education, and hope not available elsewhere. CHOP is the only institution studying the neurodevelopmental outcomes of CDH patients: their goal is to improve the understanding of pulmonary hypoplasia so that they can continuously improve care. This information is critical for families facing a prenatal diagnosis of CDH.
However, CHOP’s CDH work does not stop there. CDH is a focus for CHOP’s Center for Fetal Diagnosis and Treatment and Center for Fetal Research, the research arm for the Center and have published over 80 basic, translational and clinical research studies to provide as much information about CDH and hopefully improve outcomes for future generations.
Shands Hospital for Children’s*
At UF, the chances of survival for a child born with CDH are dramatically improved because physicians put their faith in a “revolutionary” treatment strategy rather than a traditional method – to treat these babies.
And, what is the revolutionary strategy?
“Less is more,” said pediatric surgeon David Kays, quoting an oft-used cliché.
By applying gentle ventilator therapy rather than standard hyperventilation, and delaying corrective surgery, Kays and his colleagues at the UF College of Medicine report a 92-percent survival rate among CDH-affected babies who are delivered and treated at Shands Children’s Hospital at UF compared to the national survival rate of about 50 percent. UF surgeons reported their success rate in a study that was published in the September 1999 issue of the Annals of Surgery.
Kays, who was recruited to UF in 1992 due to his experience in treating CDH babies, learned the technique from its Columbia University inventors, surgeon Charles Stolar and ventilation specialist Jen Wung, MD, while serving a clinical fellowship there. Kays credits Wung with first challenging the universally accepted hyperventilation method of treating babies with breathing problems.
“In 1985, Jen Wung told the world that if you don’t hyperventilate the babies, they actually do better,” Kays explained. “And nobody believed him. Now, we’ve done it here, and it makes it believable.
“If you think about it, it’s very counterintuitive. Here you have a baby whose lungs are too small and don’t have normal gas exchange,” Kays said. “Yet, we’re supposed to turn the ventilator way up and overventilate. No wonder these poor little lungs eventually fail from that much ventilation.”
When the UF study came out in 1999, the only neonatal centers in the nation reporting results using the novel treatment were Shands, Boston Children’s Hospital and Columbia. The word is spreading and more centers are slowly implementing the therapy, Kays said. But not many.
“It’s hard to convince people that this will work,” Kays said. “It’s very hard for doctors if they’re not true believers – if they haven’t experienced the therapy before. It’s hard for them to not escalate the therapy.
“They’re standing there watching the baby get worse, and if they turn the ventilator up, the levels get better and the baby looks better. But it’s short term. In the long term it decreases the baby’s ultimate chance of survival. You have to have a lot of faith.”
Faith is what it took for the neonatologist in UF’s neonatal intensive care unit to accept Kays’ approach when he first arrived. He came to their unit and, with CDH cases, took over control of the ventilator and just about every aspect of the babies’ care.
“The neonatologists are credited with the success of the program,” said Max R. Langham Jr., chief of pediatric surgery at the UF College of Medicine who also has pioneered care for babies with diaphragmatic hernias. “They are there to protect the care of their kids on the ventilators. It had to be hard for the NICU doctors to have a surgeon come in and manage the ventilator. That’s just not the way things are done in most places. But, there was minimal amount of resistance, and they allowed David to do his thing. You need supporters of the program. Without it, it’s no more than a good idea.”
*Taken from http://www.realhopeforcdh.com
DHREAMS (Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science) study was created to improve the understanding of the molecular genetic basis of CDH. This National Institute of Health (NIH)-funded research team is composed of health care providers and researchers across the country, coordinated at Columbia University Medical Center. Multiple medical centers are enrolling individuals and families with CDH. The knowledge gained through this research will lead to improved diagnosis, tratment, and quality of life for individuals and families with CDH.
The DHREAMS study is an NIH funded multicenter national research study of congenital diaphragmatic hernia (CDH). The goal of our study is to improve the understanding of the causes of CDH.