“’I have a sick child.’ It’s something you hear often – He’s got a cold, she has a stomach virus, or even worse they have the flu. I too have a sick child. However, my child’s illness cannot be remedied with Tylenol or Motrin or even a round of antibiotics. It is an illness he will battle his entire life. There are no complicated operations that will fix it, no magical medicine that will cure it. He will never outgrow it,” Amy Blackburn said.
Amy is mom to Theo. He was born with Shone’s Complex, a form of congenital heart disease in which four to eight different defects are present in the left side of the heart. As their cardiologist put it, the left side of his heart is “puny.” “Puny is never a word you want to hear to describe your child, let alone one of his major organs,” Amy said.
“To this day as hard as I try, I still do not have the words to describe the anxiety, emotions, and fear that consumed me as I passed my MOST precious possession off to a team of complete strangers.”
At six days old, Theo underwent his first open-heart surgery and his parents were overcome with emotion. “To this day as hard as I try, I still do not have the words to describe the anxiety, emotions and fear that consumed me as I passed my MOST precious possession off to a team of complete strangers,” Amy said. When the surgery was complete, Amy counted the cords attached to her infant son’s small body. Eleven.
Eleven tubes, wires and cords keeping all 7lbs and 8 oz of Theo stable. It was difficult to see it was the same baby. “I had studied his face and each little finger and toe diligently in the days leading up to the surgery. But, it was still hard to recognize my baby through his swollen mouth and limbs, chest tube, and ventilator, those eleven wires and lines, and that vertical scar running the length of his chest,” Amy said. Though he appeared different, it was the same Theo that had filled his parents with love and hope. “Theo was still there and all the stronger for what he had been through.”
Theo went home for the first time on his dad’s birthday, 10 days after his surgery, were he thrived. “He wrapped his daddy and I around his tiny, sweet fingers,” Amy remembered. Though he seemed to be doing great, his parents were heartbroken to find out he would need another open-heart surgery just a few weeks later to control the scar tissue growing around his aorta.
“It could be his next cardiology visit or a visit three years down the road when we hear the words ‘Theo will need another intervention.’ CHD is tricky like that. You are never in the all clear.”
Now almost a year old, Theo has had encouraging cardiology checkups and is doing normal 10-month old things like crawling and talking. “He is a happy and laid back little man.” And though Theo is doing great, Amy and her family realize that there is no cure for CHD. “It could be his next cardiology visit or a visit three years down the road when we hear the words ‘Theo will need another intervention.’ CHD is tricky like that. You are never in the all clear.” Help Project Heart in our mission to find a cure for CHD. Raise awareness, raise research funds, raise your voice to defeat CHD!