CDH Stories
Elisa’s Story - Congenital Diaphragmatic Hernia (CDH)
There were many hard days, but Elisa's life was and still is 100% worth the fight. Our pregnancy and first year with Elisa have been anything but ordinary, but we wouldn't have it any other way.
Aj’s Story - Congenital Diaphragmatic Hernia (CDH)
CDH is not a death sentence. There is so much hope for these kids. You just need to believe in them and find a medical team that believes in them as well!
Soren’s Story - Congenital Diaphragmatic Hernia (CDH)
After losing one son to CDH, we were willing to do whatever we had to do to be sure Soren survived. Without hesitation, we booked our plane tickets and made our way to Florida to meet the infamous Dr. Kays.
Kaiden’s Story - Congenital Diaphragmatic Hernia (CDH)
After we were diagnosed, I spoke to a mom who told me that if God had told her the outcome, it wouldn't have allowed her to entirely rely on Him for the months of the unknown. God led us to JHAC and gave us the strength we needed each day to make it.
Carmello's Story - Congenital Diaphragmatic Hernia (CDH)
After being born with LCDH and having his intestines, bowel, and spleen up. After 2 ECMO runs, repair surgery, nissen and a g-tube done Carmello is now a 10 year old, 4th grader, and a straight A student.
Cole's Story - Congenital Diaphragmatic Hernia (CDH)
My son was born with Congenital Diaphragmatic Hernia on the Right side. We had no idea of his condition until he was born.
Ryan's Story - Congenital Diaphragmatic Hernia (CDH)
Ryan’s CDH journey began on December 20,2017, after we were referred to OSU Wexner MFM clinic due to an abnormal finding at our 20-week scan at the OB/GYN.
Ezekiel's Story - Congenital Diaphragmatic Hernia (CDH)
Later a Facebook friend of a friend told us her story of her CDH baby and how they found hope through Tiny Hero and a CDH specialist, Dr. Kays, at Johns Hopkins All Children’s Hospital
Amya's Story - Congenital Diaphragmatic Hernia (CDH)
Once we got to Gainesville the doctor there new exactly what it was. He wrote on a piece of paper, CDH. I had no idea what that even was. He told me it was a 97 percent survival rate but she would need surgery and a long hospital stay.
Penelope's Story - Congenital Diaphragmatic Hernia (CDH)
Our Strong for Penelope supporters and the CDH community have shown us so much love over this past year it is incredibly humbling. Without their support we would not have been able to relocate the 1,861 miles away from home with half of our family in St. Petersburg Florida and the other half in Pierre South Dakota.
Adelyn's Story - Congenital Diaphragmatic Hernia (CDH)
When we received the news of the CDH, we were so devastated knowing the journey she would have ahead of herself, but we also were filled with so much hope because we knew that with the right team, she would do great.
Liam's Story - Congenital Diaphragmatic Hernia (CDH) & Omphalocele
Liam is such an extremely loving and happy little boy. Liam ran the CDH Marathon and has continued to overcome obstacles daily!
Colton's Story - Congenital Diaphragmatic Hernia (CDH)
You wouldn't know what he has been through looking at him. This kid is the life of the party. He is our survivor, our CDH warrior, our Tiny Hero.
Zachary’s Story - Congenital Diaphragmatic Hernia (CDH) and Omphalocele
I remember my OB calling me to discuss the results over the phone and trying to prepare me for getting back poor blood results. He said “you are young and can try again for a perfect baby.” This made everything sink in. When I heard my doctor suggest termination, it made me think they would terminate in my shoes, and it immediately sank in how much of a battle my little boy had ahead.
Zaria's Story - Congenital Diaphragmatic Hernia (CDH)
The surgery team explained to us that Zaria was on the better end of the spectrum for CDH (thank God) and that they were able to use stitches and no mesh was used. We were at JHAC for about 22 days.
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.
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.