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Parents of Baby Born with Birth Defect Hope to Raise Awareness With 5K Race

By Katie Honan | April 20, 2017 10:15am
 Ryan Williams was born with Congenital Diaphragmatic Hernia, or CDH.
Ryan Williams was born with Congenital Diaphragmatic Hernia, or CDH.
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DNAinfo/Katie Honan

ROCKAWAY PARK — Ryan "Rockstar" Williams isn't even a year old yet, but he's already battled the fight of his life.

The 8-month-old was born with Congenital Diaphragmatic Hernia, or CDH, which is a birth defect that prevents the diaphragm from being completely formed, pushing a baby's organs up into his or her chest.

His parents were told during a pregnancy checkup that he had at hole in his diaphragm. The doctor recommended they terminate the pregnancy. 

"We didn't listen," mom Jean Williams, 33, said.

Her husband, Brian Williams, 36, Googled the symptoms and found a website for CDH, learning about the defect and how to treat it.

CDH happens in around one in every 2,400 births yet was unknown to them before Ryan's diagnosis. 

They transferred pre-natal care to Columbia Presbyterian's Children's Hospital of New York, which has a medical center that provides care for families of children affected by CDH.

They were ready for everything that could happen when Ryan was born Aug. 3, 2016, with a surgical team waiting to whisk him away moments after his dad cut the umbilical cord. He was brought to the neonatal intensive care unit, where he spent five days before undergoing an eight-hour surgery.

Jean said the stress of surgery felt like giving birth again. After it was over, she could finally hold her first-born baby, which she was unable to right after he was born.

"It was emotional," she said.

Ryan spent nearly 40 days in the hospital recovering from surgery, and he returns every few weeks for checkups. 

He's growing and exceeding benchmarks, already crawling and almost standing up. He won't have many other side effects from CDH, and — much to the delight of his father, a diehard Rangers fan — he will even be able to play hockey. 

But the experience left a large mark on the family, who are hosting a 5K race on May 6 to raise money for the Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science, or DHREAMS, at Columbia University.

The run, sponsored by the Rockapulco Run Series, will hopefully raise money as well as awareness for CDH. 

"With more awareness, there's more funding," Jean said. 

They hope the run becomes an annual event — and would like to help families dealing with CDH who are looking for support from people who went through it.

Families are now given care packages with items donated "in memory of" babies who didn't survive CDH.

"We're want to put, 'in celebration of," Brian Williams said. "We want people to realize there's a chance."

To sign up for the 5K to raise money for CDH, click here.