May 6 Run Set To Raise Funds, Awareness FOR CDH
If you were told that your unborn child had a fatal birth defect and only had a 50 percent chance of survival, would you go ahead with the pregnancy or abort?
That is a decision Rockaway Park residents, Brian and Jean Williams had to make, but they took a gamble and won big.
Looking at spunky and energetic little eight-month-old Ryan “Rockstar” Williams today, one would never guess the harrowing, but victorious battle he and his parents fought for his life.
After a routine prenatal checkup, when his mom, Jean Williams, was just 16 weeks pregnant, the doctors gave the family dire news and a demoralizing directive. The baby had congenital diaphragmatic hernia (CDH), and because of the low survival rate, they should consider terminating the pregnancy.
CDH is rare. It’s a birth defect where the diaphragm, the thin sheet of muscle separating the chest from the abdomen, doesn’t fully form in utero and has a hole, where the spleen, stomach, intestines, and even the liver migrates up into the baby’s chest, pressing against the lungs and shifting the heart over.
According to Cherubs, a nonprofit, grassroots organization dedicated to promoting CDH awareness and research, this birth defect is rare. It occurs in one in every 2,500 babies, of which 1,600 are delivered and with a 50 percent survival rate, only 800 survive.
However, this dismal news did not discourage Ryan’s dad and mom, Brian and Jean Williams.
“The hospital with which we were initially registered, advised that we should terminate the pregnancy,” Brian Williams said. “We weren’t given a lot of information. Everything they told us about CDH was pretty frightening and broad. I decided to Google CDH and found a center in California that specializes exclusively on CDH cases.
“After consulting with them, they got all our medical records, and geared us to get care at Columbia Presbyterian's Children's Hospital of New York in Washington Heights, which has a medical center that provides care for families of children affected by CDH,” Williams said.
The family transferred their prenatal care to Columbia, received counseling on what to expect and met with a top pediatric surgeon, who according to Williams, was “confident about the surgery needed to repair the hole in my son’s diaphragm.”
Up until Ryan’s birth, the family made weekly trips from Rockaway to the hospital in Washington Heights for all the necessary prenatal checkups to make sure the baby was stable and was progressing in the womb.
On August 2, 2016, Ryan’s mom water broke, and the family made the frenetic trek from Rockaway to the hospital in Washington Heights. She delivered on August 3. Soon after Ryan was delivered, he was taken to a Neonatal Intensive Care Unit (NICU)-Transitional (NICU-T). The baby was immediately incubated and stabilized, and a tube was placed down into his lungs and he was placed on a respirator until his surgery five days later.
“After the surgery, our baby remained for about 40 days in the (NICU), where he progressively graduated from the tube taken out from his lungs to placed on a Continuous Positive Airway Pressure (CPAP) machine to help him breathe. Then eventually he was taken off the CPAP machine, and had to learn how to feed through a bottle, then finally, we were able to take him home,” Williams said.
Williams said that during his wife’s pregnancy, they steadfastly kept asking questions and researching, and discovered that CDH children are referred to as Cherubs.
“There’s a lot of support groups on the internet for families with CDH, and we reached out to them a lot. Asking questions like — what should we expect next after the surgery, the severity of our baby’s CDH compared to other children, how long did their child stay in the hospital. We just kept asking questions because obviously we were anxious and hungry for information to know if our baby had a winning chance for survival and a long, happy life,” Williams said.
Through researching, they found CHERUBS, self-described as “the world's first and largest CDH non-profit organization founded in 1995, that serves over 5,700 families in 61 countries and all 50 states affected by CDH.”
Williams said, “CHERUBS was extremely helpful to us, and along with Columbia University, who did a CDH study called, Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science (DHREAMS) on genetic testing and overall CDH research.”
The couple was compelled to help. “We decided to do the Cherubs 5K race with Rockapulcorun to give back to everyone who helped us and build awareness about CDH,” Williams said.
The Williams’ Cherubs CDH 5K Walk/Run fundraiser takes place on Saturday, May 6, at the boardwalk on Beach 102nd Street. Registration and bib pick up begins 9 a.m. at Community House, 101-19 Rockaway Beach Blvd. The Diaper Dash begins at 10:30 a.m., followed by the Kids race at 10:30 a.m., and the 5K Run/Walk at 11 a.m.
After the race, Community House will be offering one complimentary drink to runners/walkers.
If you want to sign up in advance for the race, visit: rockapulcorun.com For those who can’t make the race, the Williams family have set up an online fundraising campaign at firstgiving.com/fundraiser/CHERUBS2016/CHERUBS Ryan “Rockstar” Williams will turn one this August 3rd. According to dad, he is doing wonderfully. He is eating on his own, crawling, standing, and overall, making huge strides.
“Every so often we have to go back to do follow-up treatments at Columbia to monitor him for pulmonary hypertension, which is one of the side effects of surgery after CDH. However, they don’t expect any type of reherniation or more surgeries, which is common for a lot of kids, but as of right now we don’t have to be dealing with that.
“April is CDH awareness month. When Ryan was diagnosed with CDH, we had no clue what it was. We just want more people to be aware. Some people are told not to go through with the pregnancy, but we just want them to know, don’t give up, there is a chance and everything will be fine,” Williams said.BLOG COMMENTS POWERED BY DISQUS