CDH Stories
Braxton's Story - Congenital Diaphragmatic Hernia (CDH)
On 1-18-18 Braxton arrived and wow did we fully understand the importance of being with Dr. Kays. Braxton crashed on day 2 and went on ECMO. He had his CDH repair on day 3 and after 7 days of Ecmo he was off.
Carter's Story - Congenital Diaphragmatic Hernia (CDH)
We were so excited to be expecting our first baby. Everything had been so perfect until a 30 minute ultrasound turned into an hour and half. I knew something was wrong, but all they would tell me was they couldn’t get the pictures they needed. Once we met with the doctor we learned he had a Diaphragmatic Hernia.
Myla's Story - Congenital Diaphragmatic Hernia (CDH)
A parent’s worst nightmare is hearing something is wrong with their child. Our sweet unborn baby had been diagnosed with a Congenital Diaphragmatic Hernia (CDH). Casey and I had never heard of this before.
Colt's Story - Congenital Diaphragmatic Hernia (CDH)
After coming home, Colt has thrived. He was cleared by cardio. He's gained weight like a normal baby would. He's on normal well baby visits without weight checks in between. At 5 months old, he's already sitting up on his own.
Breanne's Story - Congenital Diaphragmatic Hernia (CDH)
At 7 years old, now Breanne has beaten all the odds. She makes me a better mom and person everyday and never gives up, no matter the obstacle.
AJ's Story - Congenital Diaphragmatic Hernia (CDH)
At 6 years old, CDH can't stop AJ! He goes full out in all sports. He loves being active & being outdoors. He loves riding his bike & playing with trucks.
Drew's Story - Congenital Diaphragmatic Hernia (CDH)
So, there we were, over the moon watching every beautiful movement our little baby made on the screen. He said “Its’ a boy!’ as he continued to scan. I kept wondering what the black hole that he kept labeling “ST” was. It was near his heart, and I didn’t remember the heart being so narrow on baby scans. I
Reese's Story - Congenital Diaphragmatic Hernia (CDH)
Dr. Kays spent 3 nights at her bedside doing everything possible to keep her off ECMO. He informed us that she was a lot sicker than we anticipated and was not improving much, so on day 4 he decided to do her repair surgery.
Charly's Story - Congenital Diaphragmatic Hernia (CDH)
I don’t remember much about our conversation except for that she asked me what Charly’s name was. She asked if we had other kids, how old, what her name was. She asked how long we’d been married. We were people to her. Not another opportunity to experiment. We scheduled a call with Dr. Kays within a few days and spoke with him for over an hour.
Reagan's Story - Congenital Diaphragmatic Hernia (CDH)
What was supposed to take 3-4 hours turned into about a 10-hour surgery. Dr. Kays had said in his years of experience, he had never had to put a baby on ECMO in the middle of surgery, and he had never encountered anything like her diaphragm and her other anatomical abnormalities that she had.
Savannah’s Story - Congenital Diaphragmatic Hernia (CDH)
I remember thinking, “Oh, just a hernia? A hernia’s not that bad.” But of course later that night, after a good bit of googling, we discovered that CDH is not just a hernia.
Noah's Story - Congenital Diaphragmatic Hernia (CDH)
After 81 long days in the hospital, Noah was finally able to go home. He was on oxygen for 11 months, had surgery to correct relux at 9 months, heart surgery to repair an open PDA at 10 months, and lots of oral meds for the first year.
Delta's Story - Congenital Diaphragmatic Hernia (CDH)
You are never prepared for the "I'm sorry your baby has something wrong with her," especially after having a normal, healthy 14-month-old baby boy. But we couldn't be more proud of our baby girl. She is still making strides and already laughing and rolling over.
Jude's Story - Congenital Diaphragmatic Hernia (CDH)
Jude has continued to thrive through the years, doing great at school and even trying out soccer and swimming (the things we never imagined possible!) He is turning 12 next month and starting middle school this upcoming school year. We are so proud of him!
Darci's Story - Congenital Diaphragmatic Hernia (CDH)
I set off on a journey with my mother to find someone willing to help my daughter.
Evelyn's Story - Congenital Diaphragmatic Hernia (CDH)
As her strength and endurance built, she increased her feeding to the point that she no longer needed the feeding tube (which ran from her nose to her intestines). Her mommy and daddy are so proud of what a fighter she is and how determined she is to live!
Dakota's Story - Congenital Diaphragmatic Hernia (CDH)
She is now a healthy, happy, perfect 7-year-old. She's smart, kind, observant, and has a gentle soul. She is our miracle and our joy!
Jaxson's Story - Congenital Diaphragmatic Hernia (CDH)
He also endured many complications during his 92-day NICU stay. At 7 days old, he had an intestinal perforation; at 3 weeks old, he suffered a pulmonary hemorrhage; and at 2 months old, he had a horrible infection. We know that it is because of God and the skills he has given Dr. Kays that we are able to enjoy our son and watch him grow, despite all the challenges he faced early on.
Logan's Story - Congenital Diaphragmatic Hernia (CDH)
When we had Logan, our family became much larger than just the three of us. Going through this journey, the CDH community has been so supportive. They've become family.
Finley's Story - Congenital Diaphragmatic Hernia (CDH)
The CDH rollercoaster is rough, but you just have to keep your eyes on the prize: taking your baby home. After 134 days and having the Nissen procedure and a G-tube placed, she left the hospital on oxygen. One of the best parts? Her exit MRI showed no brain damage!