Although we will never know exactly why Carsten was born with CDH, we do know that he has shown us a kind of strength we did not know existed and the sheer determination to fight no matter what.

With every beautiful breath she takes and every high-pitch squeal we hear, we are reminded of God’s grace and the amazing work He is doing through Dr. Kays and the JHACH team.

Looking forward to the future, Elijah has a long road ahead of him for healing and growing. He's already made it through his diaphragm repair stage, so his next step is just to see how he does as he heals.

We left the hospital at 41 days. She came home on .1 liter of oxygen and was off it in 3 months. Now, she is seven months and a thriving little girl.

Today, Arabella is absolutely amazing. Of course, she may have minor issues in the future, but if this terrible defect was a magazine, Bella would be on the cover. To think we were so close to losing her. So close to not giving her a shot to survive.

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!

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.

Jaxon recently turned one and is the happiest boy we have ever seen. He brings so much joy into our lives every single day. He's had some minor bumps in the road along the way, but each time he has bounced back stronger than before. He continues to amaze us every day with how far he has come, given where he started.

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.

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 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.

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

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.

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.

Liam is such an extremely loving and happy little boy. Liam ran the CDH Marathon and has continued to overcome obstacles daily!

But in this first year of life, if there is anything Jax has proven, it’s that he is a damn survivor. He has and continues to beat the odds and he proves everyone wrong ALL THE TIME. Watching him succeed has been so humbling, so inspiring, and has encouraged me to have faith in a tiny little human.

He is almost a year old now only on oxygen at night and 2 of his 4 medicines are being weened down so we are almost at 2 medications a day. I can’t wait to see where my little warrior goes from here!!

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.

The doctors told us if they had to remove Rakari from the machine before he was ready to get off, it would be a chance of him passing. But he didn’t. He’s a fighter, and he got off ECMO December 21, 2018.

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.