Sydney’s CDH Story
Sydney was diagnosed with Left-Sided Congenital Diaphragmatic Hernia (LCDH), at my anatomy scan while I was pregnant with her. This is a condition where there is a hole in the diaphragm that allows body parts from the abdomen to impede on the lungs and prevents adequate development. We were soon referred to Houston for the treatment and care that would be needed. Her best chance was to have a procedure called Fetoscopic Endotracheal Occlusion (FETO), while she was in utero. This would allow her right lung to develop more and give her the best chance of survival. After this was placed, I had to be within 30 minutes of the hospital with someone at all times, until the balloon was removed. We had a scare early and thought she was coming and had to take the balloon out, but luckily she stayed in place for another month before her arrival.
She was born 4lbs 15oz on December 12, 2021, and intubated immediately. On December 14th, she was placed on ECMO, and on the 16th, she had her LCDH repaired. For her repair, the surgeon said it was the biggest patch he had made for such a small baby. On the 21st, she came off of ECMO and remained intubated. I was able to hold her for the first time on January 5th. She was extubated and placed on CPAP on the 12th. One of my hardest days was on the 20th when the hospital called and they had to re-intubate Sydney. She was extubated again and placed on CPAP, then to high flow O2 later on. She was unable to tolerate any feeds so she had to have a G-tube placed before any discussions of her being discharged. Her discharge date was April 9, 2022, just shy of her 4-month birthday!
After we came home she was still on oxygen, and later that year we discovered that she had a reoccurrence with her hernia. She was not showing any signs or symptoms of this. She had her second repair in November of 2022 just a month before her first birthday. Shortly after her second repair, she was able to come off her oxygen and has been off of it ever since.
She was also diagnosed with pulmonary hypertension and was on medication ever since she was born to treat it, but thankfully in November of 2023, we were able to stop the medication, and her follow-up in March showed her heart to all be normal, aside from being pushed to the right side of her chest.
We are still working on her feeding and she still has her G-tube, but I know one day soon she will get the hang of things and we will be able to say goodbye to that as well!
I know this was a long story, but if you have made it this far, you see why she is so amazing! You would not know by looking at her what all she has been through. She is the light of my life and I know one day she will share her story with others and provide so much hope for what is to come!
