By Molly Barker, Centerville, Ohio
I have two children, a boy and a girl, and if you look at my family, you might think we all healthy and perfect. In fact, that’s exactly what we thought 11 years ago when our daughter Brinly was born. She was the longed-for baby and the daughter we always wanted. Our son Jace was ten years old and we were so excited to find out in the ultrasound that he’d have a little sister. But what seemed perfect, was not. We are a family affected by congenital heart defects.
Brinly was born a few weeks early and immediately had breathing issues. She would turn blue and stop breathing and she was diagnosed with Apnea, which, we were told, she’d outgrow eventually. She struggled to gain weight, however and the breathing issues did not go away. By the time she was two, Brinly weighed less than she did at nine months of age.
She was diagnosed with atrial septal defect and right ventricle hypertrophy right after her second birthday. This means she has an enlarged heart with a hole – a defect that is repairable but will require major surgery.
I will tell you the day Brinly was diagnosed was by far the worst day of our lives. It was excruciating waiting for a diagnosis, especially since we already knew she had a heart problem. How could our precious two-year-old little girl have a heart problem? To be honest, the thought never crossed our minds and all I wanted to do was hold my little girl and cry. We didn’t know what the future would hold for her and we were terrified.
We suddenly felt so alone since we didn’t know any other children with heart defects. I felt desperate to find someone who had walked down this road already and could help us do the same. That’s when a nurse friend told me about the American Heart Association and the Mended Little Hearts.
I knew I’d meet other families touched by heart disease, but to be honest, I was scared to hear their stories. But when I did connect with the Mended Little Hearts group, I immediately met some wonderful people who gave me so much comfort. I was so relieved to hear the success stories and meet their thriving children. It gave me hope.
Today, Brinly is like almost like any other 11-year-old. She is in fifth grade, plays with her friends, is very outgoing and loves to swim, dance and is a cheerleader. There is a great sense of comfort keeping her with us and safe and I know we will all have a difficult time sending her into the operating room.
For Brinly, a simple cold is never just a cold, an ear infection and a fever can both turn into so much more. We know her heart is weak and she often ends up in the hospital where other children would just quickly recover. We try to make life normal for her, though she does have to pace herself. She gets tired quickly and can’t always keep up physically with other children her age.
But Brinly is here. And she is doing well.
Did you know that every 15 minutes a baby is born with a congenital heart defect? That translates to 40,000 babies born each year with a serious heart issue. It turns out that what Brinly has is not so uncommon. In fact, congenital heart defects are the most common birth defect today and though it’s devastating to hear your child is affected, it’s comforting to know you are not alone.
We want to spread the word and encourage everyone to advocate for their children because many defects can be caught before birth. Unfortunately, there are still many children with defects that go undetected and many who eventually lose their lives because of it. Our mission is to raise awareness and increase funding for congenital heart defect research and research the American Heart Association’s priority.