Micro Preemie/Scimitar Syndrome/Tetralogy of Fallot

SSM Health Cardinal Glennon Children’s Hospital

Kevin's Story

Born at 14 weeks premature, Kevin, spent his first two and a half years in the hospital.

At 24 weeks, Kevin’s mom, Jennifer, had to undergo an emergency cesarean section after she had an abruption, a condition in which the placenta separates from the inner wall of the uterus prior to delivery. That was preceded by a sudden increase in her blood pressure due to preeclampsia.

Weighing only one pound four ounces, Kevin was a micro preemie. With underdeveloped and malformed lungs, only one functional kidney and two holes in his heart due to a complex congenital heart condition, Kevin was critically ill from the moment he was born and was immediately transported to SSM Health Cardinal Glennon Children’s Hospital.

Kevin spent months in the Neonatal Intensive Care Unit and struggled to breathe on his own. Kevin was first placed on a mechanical ventilator which caused further complications. To keep him breathing, Kevin was sedated not allowing him to interact with the world around him.

Just before Kevin turned one years old, he was given a special ventilator. Only the second child to use it, this allowed Kevin to be awake and alert. Kevin would continue to spilt his time between Cardinal Glennon and the rehabilitation hospital until he was able to go home.

Before Kevin could go home he had learn to use a traditional ventilator. Today, Kevin is breathing on his own and his parents hope that by the end of 2020 he will be free the trach.

Because of Kevin’s complicated medical issues, he didn’t learn to sit up until he was two and half years old and his development is delayed. He is working every day to hit mile-stones and hopes to start school in 2020.

For his parents, Jen and Dave, the first two years of their child’s life was lived in the hospital. It was overwhelming but thanks to the Footprints program (and a special nurse named Kathy), they navigated through it. Kathy was by their side everyday explaining the complicated medical procedures Kevin was going through, as well as giving them breaks so they could have a few minutes to themselves.

Super Kev, as his parents call him, is a happy, silly, active little boy who loves to smile and read books. He is always on the move and claps for anyone he meets. He loves to read for hours and play with his alphabet books.

How CMN Funds help Kevin & Kids Like Him:

Footprints℠ is a program unique to SSM Health Cardinal Glennon Children’s Hospital. This program and its staff are dedicated to improving the quality of life for children living with complex medical illnesses. The complexity of Kevin’s healthcare is why Footprints was created. For Kevin’s family, Cathy, a registered nurse, supported them on their journey, providing comfort, advocacy, and support to help them cope and thrive during the hardest moments in their lives.