All in all, I had six surgeries during pregnancy, and my son had two major open surgeries in the first two months of life—but we are both finally healthy. He is seven months old now and doing so well. He beat literally every odd imaginable. He still has his G-tube, and we work with an OT to help him transition to oral feeds.

Nathaniel’s CDH had significant complications and secondary diagnoses that made his recovery long and difficult. Our CDH warrior went through seven surgeries in his first year of life. We spent a total of 415 days in the NICU. We are beyond happy to be home with our son today!

As a first-time mom, this was one of the scariest, most intense situations I couldn’t even understand. I am so proud of the moms who have medically complex children, but trusting your mom instincts is something I will never question. As parents, we are responsible to fight and make sure we are heard for our child’s sake. If I wasn’t persistent, I might not have had my baby here with us today!

If you saw Blakely’s X-ray, you wouldn’t believe she is home and thriving! We keep a close eye on her, and her journey is far from over, but we are so thankful for her team and God’s grace for taking this rare case with a high mortality rate to a baby girl thriving at home! No one ever thought this was how her story would go, but we are so grateful.

Milly is now 9 years old, lives with right-sided cerebral palsy, and does not let it stand in the way of anything she wants to do!

My story is one of survival, gratitude, and hope. CDH has shaped my life in ways I never could have imagined, from the care I received as a newborn, to the career I chose, to the family I am now blessed to have. I carry deep appreciation for the medical teams who saved me, the resilience of my parents, and the families who continue to face this diagnosis today.

We want to share our Everett with the world. We had his name picked out before he was born. While he was in the hospital, we learned that Everett means “brave, strong, and resilient.” He quickly became known as Everett the Brave!

To every family receiving this diagnosis: never lose hope. Have faith. Speak up for your child or loved one in critical care, and never be afraid to say no. This was not the roller coaster I ever wanted to ride, I hate roller coasters, but this one was worth it.

Leevi continues to amaze us daily, hitting milestones and reminding us just how powerful miracles can be. Our family thought we were complete—but Leevi proved that sometimes the most unexpected blessings become the most extraordinary stories!

We brought our baby boy home after 65 days in the NICU, 2 surgeries, countless procedures and tests, and many more obstacles that Cooper took like a champ. The strongest boy I know. We are enjoying our time with him at home with us, and each day, he is a reminder to never take anything for granted!

Máximo still carries a scar on the left side of his chest, a visible reminder of his battle and his surgeries. He also has to see a pulmonologist and a surgeon every 6 months to monitor that everything is stable. Today, at almost 3 years old, Máximo is a child full of life. His smile reminds us that miracles do exist and that every CDH child is a true hero.

Noah is now a very happy and healthy little boy. Without the help of all the incredible nurses, surgeons, doctors, ECMO specialists, and the Heart Link Charity, we wouldn’t be where we are now. We will always be eternally grateful.

Today, two years later, Catharina is thriving. She’s an energetic, curious, and joyful little girl. She now attends daycare, where she loves music, clapping, waving at people, and flipping through books. She has her own personality—determined, affectionate, and strong.

The days are getting easier, and Abigail is continuing to grow. Her sister Lillian is hitting all her milestones and developing normally. It's nice having a community like TinyHero to connect and share experiences with other CDH parents around the country.

Today, Kaisen is a happy little boy who will turn 2 soon. He is definitely my little CDH warrior, my little fighter. This boy was fighting hard for his life and deserves all the happiness he has today.

Today, Gabby is almost 2 years old and a pretty typical toddler. She is walking and climbing everywhere and is a total chatterbox. Our wish is that others can find comfort in our story, know they are not alone, and that there is so much hope for kids with CDH.

Fast forward to today, having been in the NICU for 2 months, she was able to go home with no oxygen or G-tube. Today, she is 1, and we have to watch her breathing as she is developing asthma, but she is thriving so strongly.

After 180 days, Faith came home. We had to learn all of the ins and outs of the G-tube and being on oxygen. She had a feeding and med schedule that was to be followed. Faith is a miracle. She has grown and learned so much!

If you are reading this story with fear for the future of your own CDH baby, I pray that you are encouraged by Thomas’ story. Surround yourself with success stories and knowledge. I encourage you to dig deep to find answers to better advocate for your child in and out of the hospital. These babies are so strong and will amaze you!

We are forever grateful for the incredible care Nicholas received at CHOP. There aren’t enough words to express how thankful we are to the doctors, nurses, and everyone who walked alongside us during this journey. Nicholas is truly our miracle, and we couldn’t be more proud of him!