Thursday, October 6, 2016

Down syndrome and Heart Defects

I'll never forget how I helpless I felt when my newborn was diagnosed with a heart defect.

Ten years ago, I sat in the NICU in shock as I found out that my sweet baby Jaycee not only had Down syndrome but an AV canal heart defect. When I was pregnant with Jaycee, the grainy black and white ultrasounds were still the norm. This coupled with the fact that our ultrasound was around 18 weeks in to the pregnancy meant that my daughter's heart defect went unnoticed until she was born.

About 1/2 of babies with Down syndrome are born with a heart defect. Some of these will correct on their own, but others will need heart surgery.

Jaycee's heart defect was one that would not self-correct. A few days after birth, she went into congestive heart failure. Medications were started to help with the complications of heart failure. Jaycee had her first heart surgery at 3 months old. After the heart surgery, she needed oxygen for three months while her heart and lungs recovered. Due to small leaks that remained, Jaycee had to have a second open heart surgery again at age 2.

Jaycee's heart defect was always the scariest diagnosis for us. It was the one that could end her life prematurely and affect the quality of her life. It would also put a scar on her chest for the rest of her life.

At the time leading up to her first open heart surgery, my mind was all over the place. I was scared of so many things. I didn't want to lose her most of all. But, I also looked ahead in the future. I wondered how I would explain the scar on her chest to her. During her time in the hospital, I made sure and took pictures that I could form into a small book for her.

Title page of Jaycee's heart book

A page from her heart book
Fortunately, most of my fears about Jaycee and her heart never came to pass. She is 10 years old now and receives yearly heart echos to monitor her mended heart. She has never questioned her scar but with her limited speech she might not. We have used the book to explain Jaycee's scar to her little brother. This book was also used in a presentation I did at Jaycee's school for the Jump Rope for Heart kick-off.

I feel blessed that we live in a country with access to wonderful medical care and doctors with the abilities to help our children with Down syndrome live longer lives.

For more on Jaycee's heart surgeries, read:
A Heart Surgery: Part 1

A Heart Surgery: Part 2

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