Saving Little Hearts - helping children with congenital heart defects

You can always learn a lot from your children. They teach you to have fun. They show you the simple pleasures in life. They teach you how to do their math homework. They give you joy, show their unconditional love, make you laugh, inspire you to try new things. Did you ever think they would teach you how to use a feeding tube? Did you think they would teach you how to measure medicine in milliliters and know the complex function of each drug? Did you know they could teach you about strength, patience, hope and success all through an open-heart surgery? They can.

Ryan Matthew was born on his father’s birthday following an induction. Within 12 hours after he was born, a special care nursery doctor came in and quickly told us “the baby’s” (MY baby’s) heart had not formed properly and he would need surgery. Can they fix it? I remember asking. Yes, it can be fixed, she said and left. The problem was HLHS-Hypoplastic Left Heart Syndrome. Ryan's first surgery was when he was three days old. We came home with a baby that was fed by a tube in his nose, a baby who had lips turn blue each time he cried and a baby who had a hard time falling asleep without all the hospital noise he had listened to in his short life.

The next surgery of the three-stage process didn’t have to be done until Ryan was six months old. He was now almost four months old and the doctors decided they needed to do the second surgery now. I had not done any research on Ryan’s heart condition after he was born. The statistics were too hard to read and the surgeries too complicated to understand. But as I researched more and read more, becoming informed made me feel better. I could actively take part in Ryan’s medical care and ask the doctors about things I had read and understand their answers. All the research I did on the three stage surgeries for HLHS babies kept pointing back to one surgeon. His name was actually used to label the first stage surgery; the doctors called it the Norwood Procedure. I found Dr. William Norwood and he was at a hospital only ninety minutes away. Dr. Norwood’s philosophy was the answer and he operated on Ryan three days after Ryan’s first birthday.

Ryan hit every complication to be had. He was fed through a tube for 18 months, he had a paralyzed vocal cord, he had some developmental delays, infections in his surgery wounds and kept on oxygen for a time. But he fought every step of the way and taught us to fight for him. Ryan is now 5 years old, made it through a year of Kindergarten and never stops talking!

Ryan is an amazing kid and has taught us so much about life. He is doing fantastically well now and has more energy than ever. He does not know he is any different than anyone else, except that he can show you where his heart scar is and knows how to take the same medicine twice a day. Ryan has even inspired me to go back to school and pursue a Pediatric Nursing career. I had written a book just for Ryan to show him what his life was like as a baby. I also created and currently distribute an HLHS Handbook for parents/caregivers going through the same experiences we did. I receive emails each day from parents looking for hope and just seeing Ryan's picture says it all. It's been four years since our last heart surgery and it only gets better. Ryan knows: To the world, you are one special child; to one special child, you are the world.