Beth Hickam – Proud of Caroline
Beth was born and raised in MD. She is proud of her 3 children, one of which is a CHD survivor. In addition to working full time, crafting keeps her sane. She loves to sew and crochet, among other things, and enjoys teaching these skills to her children and the scout troops she has led over the years.
I had a perfect pregnancy – no morning sickness, no swollen ankles, no heartburn.
I had a perfect delivery – only 5 hours of hard labor and my first child, a daughter, slid into the world easily.
The next day was not so perfect. The doctors listened to her heart. Different doctors came in and they listened. They spoke quietly to each other. Clearly, there was an issue. Something structural, we heard them say.
The next day they gave us a diagnosis. They determined that our baby had a condition called Tetralogy of Fallot, or 4 defects in her heart. They told us that she would probably require surgery in about a year or so. And then they sent us home with her.
As a first-time expectant parent, I wasn’t too nervous about the birth – the baby comes out one way or another, right? My biggest concern was what we would do when we brought her home – would I know what to do? Was I ready for the sleepless nights? How much do I feed her? You know, normal parent stuff. But what now?
Caroline would scrunch her little legs up, looking like a frog against my chest. We learned that scrunching eases the effort of the heart, since it doesn’t have to pump blood as far. My husband started studying – what was this condition? How is it fixed? Who is the best at fixing it?
We took her to cardiologist appointments and her normal pediatric checkups. At her two-week checkup, she was looking particularly blue. The pediatrician sent us to the hospital. It wasn’t going to be a year before we needed to act.
The hospital recommended a procedure, but it was more of a band-aid. Thanks to all our preparation, we knew there were doctors performing primary corrections. My husband got Caroline on a medical transport plane and they headed up to Boston Children’s Hospital. We chose him to fly with Caroline because he had the knowledge to land a plane should something go wrong – these were the types of thoughts going through our minds. I traveled via commercial air so that I could get there ahead of them and get all the paperwork in order.
My neighbor and my parents helped get us out the door. They cleared our fridge, took turns at the local hospital while we packed, and they got us to the airport.
At just over two weeks old, we handed our only child over to the nurses. Her heart was the size of a walnut, and the surgeon worked on her for four hours. Some local family members came to visit us while we were in the hospital, which was a nice break during such a stressful time. About a week later, we were able to take her home.
The first night she was grunting. Was it her heart? At 1am I called up to Boston. They told me she probably had gas. I now was allowed to worry about normal baby things.
Fast forward through 21 years…
Caroline played soccer, was on a competitive jump rope team, a dance team, played volleyball, plays 8 instruments, earned her Girl Scout Gold Award, had a second open heart surgery to insert a pulmonary valve, graduated college with honors in 3 years, and is now working for the American Heart Association to use her personal experience and passion to help others.
We couldn’t be more proud!
The message I have for parents who receive a CHD diagnosis for their child is to not give up hope. Educate yourselves, challenge everything, and ask lots of questions of the medical community. You are your child’s best advocate. We knew that everyone we dealt with had Caroline’s best interest at heart, but it was our job to find the person that had the best chance of delivering the best outcome. I think we chose well.
From friends, neighbors, work, family – ask for help if you need it, and accept help from those who offer. It takes a village to raise a child.