Join us this week as The Williams Family shares their son’s journey on the CDH Radio Show, after he was diagnosed with CDH.
Tune in at 6:00 pm EST, November 16, 2021 to https://www.blogtalkradio.com/cdh/2021/11/16/november-9-2021-guests–jean-and-brian-williams-parents-of-survivor-ryan.
Listen to archives of the radio show at http://www.cdhradio.org.
Jean and Brian Williams world was rocked when Jean was 16 weeks pregnant with their first child. Jean had went to an OB appointment with her mother, for her husband was working at the time and it was just to be a routine appointment. It was this appointment they heard the baby has a hole in their diaphragm. Jean shares, “I believe I found out sooner than many pregnant women do here because I actually have a birth defect myself called uterine didelphys.” Due to her birth defect, she was considered high risk and all of her ultrasounds were considered high risk.
At this 16 week appointment, Jean called her husband letting him know the doctor wanted to speak with them. Brian shares, “I just had a kinda bad feeling…16 weeks everything should have went A-okay and the doctor wanted to talk with us.” She went on to explain to them both, the baby’s diaphragm didn’t form, never mentioning CDH in her explanation and she was highly recommending termination. From here, Brian started googling hole in the diaphragm. He came across UCSF and made a phone call while Jean was headed home from her appointment. This phone call lead them to a Kristen Gosnell, a nurse, that was able to help the Williams family.
Jean shares, “enter Kristen, a complete stranger with a halo, spoke to us at length for a better 60 minutes. She described this as CDH, a rare condition but similar statistics as Cystic Fibrosis and Spina Bifida. CDH is basically when a baby’s diaphragm is not fully closed and organs pass in and out (picture a quick sand timer). Lungs get compressed to one side, heart can be squished….depending on which side the hernia is, the stomach or liver is up in the chest cavity. After faxing over every bit of paperwork to Kristen, our angelic new friend at UCSF, she confirmed we have a minor case scenario and to NOT jump to such extremes as said doctor advised 2 hours ago. PHEW! She informed us of key numbers to watch out for along the way, but there would be no promises until Baby Williams arrived. Regardless of our outcome, we were told our baby would need surgery and a NICU stay.”
This phone call to angel Kristen lead them a week later to Children’s Hospital of New York, about 1 1/2 hours away from home to continue Ryan’s care. During the pregnancy they did not find out what they were having, Jean wanted it to be a surprise.
The rest of the pregnancy, Brian and Jean leaned on each other and remained strong. 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. Ryan spent nearly 40 days in the hospital.
Tune in to tonight’s radio show to hear about Ryan’s arrival into this world and more about his NICU journey. Hear Jean and Brian share more about their rockstar son.
Jean shares, “It could have been traumatic, so I decided to rely on my faith and my prayers and my angels above and my husband kept us going strong and we got through it. Now we have a very healthy, happy and rambunctious 5 year old.”
