CDH Stories
Emma's Story - Congenital Diaphragmatic Hernia (CDH)
After 37 long, stressful, emotionally paralyzing, heartbreaking but awe-inspiring days later, our baby girl was discharged and able to come home!
Livia's Story - Congenital Diaphragmatic Hernia (CDH)
Every day there was less medication and less oxygen. She eventually came home at 51 days old. No oxygen and feeding orally. SHE DID IT!
Legend's Story - Congenital Diaphragmatic Hernia (CDH)
Legend started kindergarten this past September and is reading and writing. He has tons of friends, involved in sports, and is just the biggest miracle ever. We are so blessed by our Tiny Hero!
Addie Ann's Story - Congenital Diaphragmatic Hernia (CDH)
We still have procedures and surgeries to worry about, but she’s a very happy girl and such a firecracker! We love her and her scars that tell an amazing story and we always take the chance to spread awareness.
Abel's Story - Congenital Diaphragmatic Hernia (CDH)
We were asked not once, but five times if we were “sure” we didn’t want to abort the pregnancy. Our firm answer was no.
Axel's Story - Congenital Diaphragmatic Hernia (CDH)
He is now 8 months old and I'm talking about what to plan for his 1st birthday. I hope you find hope and comfort in his story. He still has challenges, but we are bravely fighting them one day at a time. And always remember slow and steady wins the race.
Charlie's Story - Congenital Diaphragmatic Hernia (CDH)
The high-risk ultrasound is a blur to me now. I don’t recall much of the conversation with the doctor after either, except for when I was asked if we wanted information on terminating the pregnancy. Typing that sentence out physically takes the breath out of me because of the amazing little boy that we now have in our lives.
Harlan's Story - Congenital Diaphragmatic Hernia (CDH)
We got to remove the oxygen on his first birthday, which was the best birthday present ever! With the help of many therapies, Harlan is now a thriving 15-month-old with a constant smile on his face who cruises everywhere, eats everything by mouth, and babbles up a storm.
Bennett's Story - Congenital Diaphragmatic Hernia (CDH)
Before our appointment with maternal fetal medicine the following Monday, we gave him a name - Bennett James - we wanted everyone to know that no matter what we were told at that appointment, he was important, and he mattered.
Gabriel's Story - Congenital Diaphragmatic Hernia (CDH)
She tried to look at me with a reassuring look, but I knew something was very wrong. I said through tears in my eyes “just tell me.” She said she could not hear any breathing sounds on the left side of his body.
Camden's Story - Congenital Diaphragmatic Hernia (CDH)
I hope by sharing Camden’s story that another family will read it and realize that you don’t have to settle for 13%. Our 13% just turned a year old and is doing amazing!
Arabella's Story - Congenital Diaphragmatic Hernia (CDH)
We paid an outside source for an early gender reveal. We delayed going home be we could not contain our excitement to finally have a girl. We were over the moon. We celebrated and danced around singing "we're having a girl." Little did we know how irrelevant gender was during the anatomy scan.
Micah's Story - Congenital Diaphragmatic Hernia (CDH)
The overwhelming support of family, friends, employers, and the CDH community coupled with many, many miracles sprinkled throughout the next five months enabled us to relocate from California to Florida in preparation for Micah's arrival. God’s hand was so evidently involved in every step of the way.
Taylor's Story - Congenital Diaphragmatic Hernia (CDH)
I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU two hours away, so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO.
Landon's Story - Congenital Diaphragmatic Hernia (CDH)
On day 323, we were discharged from the hospital...just a few days before Landon’s first Christmas! What a treat it was to spend Christmas together outside of the hospital. And on day 355, Landon finally made his way back home to South Carolina! Just one week shy of his first birthday! Our journey is a long way from over, but we’ve come so far than the 35% chance of survival that we were initially given!
Xander's Story - Congenital Diaphragmatic Hernia (CDH)
Xander is an amazing kid. He's smart, funny, compassionate, and kind. He loves to run, loves to be outside, and wants to be farmer when he grows up.
Olivia's Story - Congenital Diaphragmatic Hernia (CDH)
She weighed in at a tiny 3 pounds 15 ounces. She cried twice before they could intubate her. The most wonderful sound I have ever heard.
Kennedi's Story - Congenital Diaphragmatic Hernia (CDH)
She was placed on ECMO at less than an hour old and had her repair surgery was done at 6 hours old while on ECMO. She stayed on ECMO for 13 days. 95% of Kennedis’ left diaphragm was missing and Dr. Kays said her lungs where so small they were nonexistent.
Rylee's Story - Congenital Diaphragmatic Hernia (CDH)
“When they first told me She had it, I had never heard of it and didn’t even knew how to pronounce it. This awfully horrid defect I’d never heard of quickly changed our world and became something I would need to live with each day.”
Scarlett's Story - Congenital Diaphragmatic Hernia (CDH)
Despite her setbacks and despite undergoing open-heart surgery, she is a healthy, happy baby. She shows no signs of pulmonary hypertension, is off oxygen support, and is off all medications related to CDH, despite having been born with only 20% of her left lung.