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!

We are so incredibly proud of how strong Clara has been through all of this, and how amazing the care that we have received has been. She still has a long road ahead of her with future surgeries, but the long term outlook is very positive!

Today, Sofia is 3 ½ years old. She is strong-willed, vocal, stubborn, and a leader. She knows what she wants and fights to get it. I have no doubt these traits helped her fight for her recovery. Sofia’s yearly follow-up appointments and x-rays have all been met with good news, so we continuously pray it stays that way.

Each time Forrest was faced with a mountain, he seemed to climb over it with ease. As his parents, it was miraculous to watch him be so strong when we were barely holding on!

At two years old, Vincent is thriving and has caught up developmentally to other kids his age. We are so proud of our Tiny Hero. His strength through all the surgeries and ups and downs of his NICU stay is unmatched by anyone we have ever met. What a journey it has been for us with Vincent, but we are the luckiest parents to have him as ours.

Tate spent 2 months at Children’s Mercy in Kansas City and was discharged on May 16th. Tate was taken off oxygen on July 23rd and has remained off oxygen. These babies are wonderful, and your life will look so different years from now. It’s okay to get discouraged, but please don’t stay there!