CDH Stories
Cora's Story - Congenital Diaphragmatic Hernia (CDH)
Cora was an undiagnosed case of CDH. My pregnancy was planned and normal, nothing uneventful. My anatomy scan was completely clear, along with my quad screen.
Henry's Story - Congenital Diaphragmatic Hernia (CDH)
I was given the option of sending him with a 5% chance of survival and risk him dying alone or I could hold him while he passed. I had to send him, it was never an option for him to die.
Zayna's Story - Congenital Diaphragmatic Hernia (CDH)
She actually SCREAMED. We were told that wouldn’t happen. We were told she might not seem responsive or have any of the normal “just born baby” things. But she cried.
Dayly's Story - Congenital Diaphragmatic Hernia (CDH)
And so, Dayly received the infamous CDH “line” as she now calls it. The scar that includes her in a special club of survivors.
Emerie's Story - Congenital Diaphragmatic Hernia (CDH)
Today, Emmie is a completely perfect and healthy (almost) 7-year-old! She loves homeschooling, her big sister, and playing with her friends and family. She is an incredible little builder and delights in showing off her newest creations — from Lego structures to elaborate forts. Our life truly is one “after CDH” and not “with CDH.”
Suzanne's Story - Congenital Diaphragmatic Hernia (CDH)
My life hasn't been easy as a CDH survivor, but I am a professional photographer, vocalist, dancer, and petite model, and I feel incredibly fortunate to be on this earth and to be able to share my gifts with the world!
Max's Story - Congenital Diaphragmatic Hernia (CDH)
After twenty-eight days in the hospital, we were able to go home. I know that stay seems so short compared to some, but I am so thankful how amazingly well he did and continues to do! Max will be 2 years old next month and has never had any other health issues.
Lucy's Story - Congenital Diaphragmatic Hernia (CDH)
Lucy Sofia may have had to wait 31 days after birth to be embraced by family and friends, but the truth is, she has captured the hearts of many from day 1. She is a testament to how even the frailest can empower; the tiny can have a huge impact.
Ethan's Story - Congenital Diaphragmatic Hernia (CDH)
“Meet your little guy, Mom! Congratulations.” That was when I knew that Ethan was in good hands because for the first time I had a doctor congratulate me on the blessing that is my baby. It was the best feeling in the world to know someone was fighting alongside us to do whatever possible to save our baby.
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!