Congenital Heart Defect Awareness: Our Family's Story

I remember vividly walking into the NICU to visit my daughter Jaycee the day after she was born. I was surprised to see there was a flurry of activity around my baby. Several doctors surrounded her tiny bed focused on a screen connected to something I could not see. A nurse showed me to a chair away from the action where I sat wondering what in the world was going on with Jaycee.

Earlier in the day, several doctors told my husband and me that our baby had Down syndrome. Now there appeared to be something else concerning. Soon, a female doctor broke from the pack and approached me. The young doctor jumped right into telling me that my daughter an atrioventricular heart defect. Essentially, she had a hole in the center of her heart. Half of babies with Down syndrome have a heart condition, but not every heart defect requires surgical intervention.

Within a few days of her birth, she was in congestive heart failure and had pulmonary hypertension. After spending 10 days in the NICU, my husband and I took Jaycee home.

Bringing home a newborn in heart failure meant our lives were a little different. Giving medications became part of our daily routine. Getting these medicines down a newborn with an easy gag response and reflux proved difficult. Then there were the feedings, which were exhausting for both of us. Her suck was not strong at all. She tired easily and slept nearly all the time. Jaycee was overall so weak and tired that she literally could not cry. Instead she had a weak little noise that we determined was her version of a cry. At home, we had to find a balance between showing off our newborn while limiting her exposure to germs.

When Jaycee was 3 months old, she had reached nine pounds, which meant she was big enough for her open-heart surgery. This was a bittersweet moment for my husband and me. We were ready for Jaycee’s heart to be fixed, but we were scared of all of the rare but possible side effects from surgery. Handing your tiny baby over to a team of doctors knowing her body would be forever marked from the day was a moment we worried about since we had gotten her heart diagnosis.

Despite our fears, Jaycee’s surgery went absolutely perfect. We were amazed at how a little body can recover from a major surgery. The capabilities of doctors were astounding for us hospital newbies. The idea that our daughter’s chance at life was only due to the ability of these men and women committed to saving the lives of every child was not lost on us.

Today, Jaycee’s heart is no longer our biggest concern, but it took awhile to get to that place. She did need another heart surgery at age 2 to fix some of the leaks in her heart left from the first surgery. Jaycee also had two heart ablations for Wolff-Parkinson White syndrome, which caused a tachycardia at age 5. Now Jaycee has yearly cardiology appointments to monitor her leaks and slightly elevated pulmonary pressures, but the doctors are not anticipating any more surgeries.

With this month being Congenital Heart Defect Awareness Month, my husband and I would like to share the story of our daughter’s survival. When a heart diagnosis is made, there are many unknowns. We were worried about our daughter’s future and life. We are grateful those days are behind us. Our Jaycee is now a vibrant 11-year-old with energy and an ability to scream and cry.

Follow this journey on A Special Purposed Life.

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