COTA for Noah's Heart

Our Story

When you find out you’re expecting, it becomes the happiest moment and everything after is supposed to be joyous! But after 20 weeks of joy, came fear, uncertainty, sadness, anxiety – every emotion but joy. At our 20-week anatomy scan, our thoughts of how it would look to bring home a little brother to our other son changed.

Our son Noah was diagnosed in utero with HLHS – Hypoplastic Left Heart Syndrome. It was extremely scary news for us and we had so many mixed emotions about how we were going to move forward. Along the way we met so many amazing people who have given us information and personal experiences. We found hope in this and although we knew this wouldn’t be easy, it was worth the fight.

September 10, 2026 when Noah was born, he was one of the biggest babies on the CVICU floor which is great since he would have to undergo heart surgery within the first week of his life. With HLHS, there are three main surgeries with the first being the Norwood, then Glenn and lastly, the Fontan. Noah underwent his Norwood surgery but a few days later, he was put on ECMO – a life saving support machine that takes over the work of his heart and lungs. After a few days of being on this, the team decided to do a Norwood Revision. The first month was a struggle for him but he fought so hard and surprised the doctors in many ways! 

After that Noah began to grow and heal and develop such a personality! All eyes have to be on him, and he tends to roam the hallways as often as the nurses let him. He is such a happy guy and extremely food motivated! He was the best bottle eater taking 80-100% of his foods by mouth! After 70 days, Noah was home!!! However, it was short lived because 52 hours later, we were being transported back to Riley. 

Noah has unexplained heart deterioration. So since November 22 we have been at Riley and just found out in January that he would need a heart transplant because his heart function is slowly diminishing. As of January 22 we have been officially listed for a heart transplant, where we will be until he gets a donor heart. 

While being hospitalized, Noah is still doing normal baby things! We work on rolling over, which he is able to do almost all by himself, sitting up, playing with toys, and when the times comes, trying purées and crawling! He hasn’t let his heart slow him down by any means. He is a true fighter. He wants to fight and because of that, we fight for him.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.