Deepti’s Story - Congenital Diaphragmatic Hernia (CDH)
My little girl, Deepti, was diagnosed with LCDH during our 20th-week ultrasound. She was our first baby. It was devastating news when our OBGYN wrote "diaphragmatic hernia" on a piece of paper and told us not to look it up until after our appointment with the neonatal care team at Wisconsin Children's hospital. It was the most challenging week for us, not knowing what it was and how it would change our lives. Deepti was given a 50% chance of survival overall and a 40% chance of needing ECMO after birth. August 23rd, 2019, at 8:45 am, she was born and whisked off to the NICU. She had her LCDH repair surgery at only four days old, was reherniated at 11 days, and a patch and transabdominal surgery one day later! She outdid the predictions and never required more than room air on the ventilator. She was off oxygen support within three days after both of her surgeries. We were finally discharged on day 49. She still has a GJ tube for feeds and has begun eating by mouth. She is also ahead in developmental skills and communication skills. We are so proud of her and cannot wait until she becomes a neonatal surgeon herself!
We are forever thankful to the teams at Wisconsin Children's hospital, Johns Hopkins, Aurora Baycare, and the Froedtert doctors and nurses for being with us throughout the countless ultrasounds and surgeries. We hope to spread awareness and strength to all parents out there. It's tough, but CDH babies are the strongest. Deepti is our inspiration!
Update:
Deepti is about to turn three. She has overcome all her milestones and is now a G-tube graduate! Her latest X-rays revealed that the Gore-Tex patch is stable and shows no signs of reherniation. We are working on her reflux with medication, but that's pretty much it. The doctors consider her lungs to now be normal in size and function. We are so proud of how she is overachieving in her motor skills and communicates like an adult in full sentences. She is about to start school this year and is the happiest little toddler who loves chicken fries, Blippi, and the outdoors. As always, we truly appreciate Tiny Hero and the CDH community that has always been and is by our side. God bless you all!