Grayson’s CDH Story

Grayson was diagnosed at his 20-week anatomy scan. I quickly decided that I needed more help than I was receiving and needed to learn as much about CDH as possible. I finished my prenatal appointments with UT physicians and then went on to deliver Grayson at Children’s Memorial Herman Hospital in the Texas Medical Center. He was born at 37 weeks on August 28, 2021. At three days old he was stable enough to have his CDH repair. As he was being closed up, his oxygen levels started dropping, and he was put on ECMO. He was on ECMO for about a week. His stomach, bowels, and a small portion of his liver were moved back down. He was diagnosed with Left-Sided Congenital Diaphragmatic Hernia and had a size C hernia. He was intubated for about two weeks, CPAP for two days, and was breathing on his own for two weeks but had to go back on and stay on oxygen due to hypertension.

Right around his second month in the hospital, we decided it would be beneficial for him to have a G-tube placed. He could go home sooner with a G-tube and also because we discovered he was aspirating. He finally was able to come home from the hospital on October 29, 2021, so right at two months. He was sent home on oxygen due to his hypertension, which he came off of around six months old. He started feeding therapy around five months, and by the time he was one year old, he had a swallow study and was cleared to eat and drink. He did physical therapy from 11 months to just a little over two years old. He learned how to crawl and walk while in physical therapy.

Currently, we’re going into speech, feeding, and occupational therapy. He hasn’t started talking yet, but he definitely tries and knows how to communicate to show what he wants. He still has a G-tube, but we’re working hard to get it off. We’re focusing on trying more foods with textures he doesn’t care for and just taking in more foods orally. His weight is also something we are working on keeping up. He’s maintaining it pretty well because he is finally showing up on the growing charts!

Grayson has definitely pushed through many obstacles thrown his way, but he comes out even stronger each time! He will turn three this year, and every time I look at him, I can’t even believe what he’s been through and how far he has come! I’m so thankful for the support groups I’ve joined and all the medical professionals we have met. This journey has not been easy, but it has helped to know that there is a community of families out there to which you can relate!