Heterotaxy Syndrome

St. Louis Children’s Hospital

Noah's Story

If you ask Noah what he remembers about being in the hospital, he tells you all the cool toys he got! For Alana and Casey, his parents, they remember seeing a doctor literally holding Noah’s heart in his hand, massaging it to keep him alive.

Noah is truly their miracle. Born with significant heart defects and Heterotaxy Syndrome (a rare condition where the heart or other organs are not formed correctly or are in the wrong position within the body), Noah’s parents were told he probably wouldn’t survive.

As soon as Noah was delivered, he was rushed to the first of three heart surgeries he has had in his short life. While it was good news when Noah cleared this initial hurdle; he still faced additional surgeries to repair his heart and fix other organs affected by his Heterotaxy Syndrome.

With only two chambers to his heart, Noah doesn’t let that slow him down. He is full of energy and has a zest for life. He loves school and wants to go everyday (even on Saturdays)! He can often be found baking cookies with his mom or playing cars with his baby brother.

How CMN Funds help Noah

Noah spent 60 days in the Cardiac Intensive Care Unit at St. Louis Children’s Hospital. Children’s Miracle Network raises money that purchases lifesaving cardiac monitoring equipment that enables the care team to monitor the heart-function of children who have had complex cardiac surgery.