Nash’s CDH Story

To start off our story with CDH, I went in for my 12-week NT scan, and I could immediately see something was wrong. Then the doctor came in, and sure enough, they saw something wrong but weren't sure what it could be. At first, they thought it could be an ovarian cyst. We had bloodwork done, and we found out it was a boy! Which was so exciting but also upsetting because that meant it wasn't a simple cyst.

We went in biweekly to monitor and see if they could determine what it was. For a few months, they thought it was duodenal atresia. We had a fetal MRI at 23 weeks, and the doctor didn't exactly like the way his organs looked but said they looked "normal-ish." Then fast forward to the 28-week scan and our wedding anniversary, and we got the "everything is normal!" We were so relieved, but I knew something was still wrong.

I got another ultrasound at 32 weeks, and I remember being scanned for hours and then doing an NST test as well. I was alone for this appointment and thought nothing of it because we got the all-clear a few weeks prior. The ultrasound technician then asks me to go and meet the doctor in his office. Right then, I got a pit in my stomach. He told me to call my husband. Then, we found out Nash had Congenital Diaphragmatic Hernia (CDH), and he was pretty certain it was that. Still, we needed another fetal MRI to confirm. I had absolutely no idea what that meant.

I was told he'd be taken immediately from me and intubated. He would need life-saving surgery. This was so crushing to me because we had an almost 2-year-old at home, too. Fast forward to delivery day. Nash came out not breathing, and they had to resuscitate him. But let's just say he came out fighting after that. They called him Goliath because he was a very angry guy- pulling his tubes out, etc.

Thankfully, the surgery at 2 days old was a success, and he had 10% of cases with a sac covering the hole, which helped keep his organs down longer, which I'm sure saved his life!

He has had a tough road of life so far, with anaphylactic allergies to peanuts, eggs, milk, and fish. He had RSV bad at 4 months old and was in the PICU for 12 days. He has had strep and staph on his head. Awful sicknesses. But he is the toughest guy I know. He's SO resilient and has shown everyone to not always look at statistics and blow them out of the water!

- Merry Williams and family