This is the fifth in a series of blogs submitted by congenital heart disease survivors or parents for Congenital Heart Defect Awareness Week, which is celebrated February 7-14 each year.
By Bridgette Flack
Our 10-month old baby girl was a tiny little thing! She won hearts everywhere she went with her smile and sweet laugh. But, we knew there must be something not quite right. She didn’t seem as happy and energetic as other babies her age. She wasn’t motivated to crawl and seemed to become fussier as the months went by. We were first time parents, but we knew babies are unique and ever changing, so we were not too concerned. At her well baby visits, the only thing the doctor was concerned about was her size – she never even had an ear infection! We were keeping a close watch on her weight and even had a plan to have tests run in the coming week. Then, we found out what was different about our little girl.
One day, Madeline got agitated, cried, and looked as if she fell asleep for a split second. Then, she woke right up. If you weren’t watching it or didn’t know her, you wouldn’t think anything happened. These “episodes” occurred once a day for four days. Finally, it was time to call the doctor. We were on a family walk, a dog startled her, and she looked as if she passed out for a few seconds. This doctor visit ended with an ambulance ride to Le Bonheur Children’s Hospital where Madeline was diagnosed with four congenital heart defects.
Madeline had open heart surgery about a week later to patch a large hole between the top two chambers of her heart and repair a tear in part of her mitral valve. She also had pulmonary hypertension and a rhythm disorder. The doctors decided to treat these with medication. Just days after she came home from the hospital, our pediatrician called to check on her. She was like a different baby! She was laughing all the time! The doctor said, “She probably didn’t have energy to laugh much before.” Her heart was using all of her calories and working so hard to pump that she had no energy left to just be a baby. Understanding this made us so very thankful for the doctors and nurses at Le Bonheur who saved our little girl and gave her childhood back.
Over the years, Madeline has had several heart catheterizations to give doctors information they can use to best treat the parts of her conditioned that are not yet repaired. She had a feeding tube placed when she was one to help her catch up on the growth chart. Again, this was a wonderful decision. Le Bonheur provided her with feeding therapy to help to learn how to eat while getting the additional calories she needed to grow through the feeding tube.
Right now, Madeline is an active 11-year-old in the sixth grade. She plays the violin and enjoys school and time with her friends and family. She is a typical middle schooler in many ways, but she will need a new mitral valve eventually. Although a repair was made to that valve when she was a baby, it is not enough – that valve was just formed smaller than it needs to be. We trust her doctors, and know we will replace that valve when the time is right.
Le Bonheur, her wonderful doctors and nurses, and certainly the research being done by the American Heart Association have provided our daughter with her childhood. Among other things, she cracked a tooth in half being silly in the swimming pool to prove it! We are so thankful she has energy to swim and be silly!