Congenital Heart Defect Awareness: Jaycee's Story

I remember vividly walking into the NICU to visit my daughter 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 now.

Earlier in the day, several doctors told my husband and I 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, blond doctor jumped right into telling me that my daughter had 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 dealing with 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 the medications Digoxin, Lasix, and Potassium 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 9 pounds which meant she was big enough for her open heart surgery. This was a bittersweet moment for my husband and I. We were ready for Jaycee's heart to be fixed so she could have a better life. 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 the moment we dreaded 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 as 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.

Jaycee in the hospital after her heart surgery

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.

Today, being Congenital Heart Defect Awareness Day, my husband and I would like to share our daughter's story of 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. For that, we are thankful!

Jaycee at home on oxygen after surgery

Personal note: Jaycee's heart surgeries were performed by Dr. Charles Huddleston. Her cardiologist, Dr. Mark Johnson, has been instrumental in her care as well. All of her heart care has been received at Children's Hospital in St. Louis. We are grateful for this hospital and all those involved.

A Heart Surgery: Part 2

Nothing seemed to be out of the ordinary with Jaycee.

We took Jaycee in for her routine heart echo and waited for the results in a little room. When the cardiologist came in, shut the door, and sat down, we knew automatically that something was wrong. The cardiologist gave us the bad news and feared that another open heart surgery may be necessary. Only a small percentage of kids need a second heart surgery. We were hoping Jaycee wouldn't be in this group.

A diagnostic heart catherization was scheduled to determine precisely if another surgery was needed. We were scared of all of it. The heart cath had its own risks, and we were afraid to find out anything bad. Jaycee was 21 months old and had just started walking. Now, her health was priority number 1 again and developmental issues would have to take a back seat.

Jaycee made it through the actual catherization. Afterwards, she had to keep her legs completely still for six hours to prevent a hemorrhage. Jaycee was groggy but moved around often. My husband and I took turns holding down her legs for the next six long hours, which was something we had not anticipated. Near the end of the six hours, we were preparing to go home. However, Jaycee went into respiratory distress and a blood clot formed in her leg; both of these were potential risks of a catherization. It landed her in the intensive care unit for the night. But, she recovered quickly and responded to treatment.

The next day, she was "better" but the results were not good. Two leaks in her heart and pulmonary hypertension were confirmed. Another heart surgery would take place 6 months later. There was plenty of time to get more photographs of her and of us together and to make necessary preparations.

This time, before the surgery, we took a short family vacation to Branson, Missouri. The vacation helped me relax and I enjoyed getting away from our ordinary life of therapy, medicine, and work. My husband, on the other hand, said it was hard for him to enjoy the vacation and would have rather been home. It's mentally hard when your child is going to have major surgery. Still, we had some neat experiences with Jaycee during that trip. Even my husband would agree with that.

In May 2008, we once again took Jaycee into the hospital for pre-operation tests and meetings. The next day, we arrived early at the hospital. Jaycee was 2 years old. We knew her personality, what her cries meant, and had developed a strong bond. It wasn't that we weren't bonded when she had her first heart surgery, but as a newborn she just didn't do much. Now, we had 2 years into our relationship. It made it difficult to hand her off to the surgical team this time. I didn't want to let go, but I knew I had to.

Jaycee's surgery lasted 4 hours. The valves were repaired. The surgeon felt it went well despite there being some scar tissue. Jaycee spent the rest of the day being sedated in ICU. The next day, Jaycee was moved out of the ICU and was off of oxygen. Her voice was hoarse and she choked on liquids.

After surgery, Jaycee was in pain. She wasn't sleeping well. It was apparent that she was sore. It was hard to find words to comfort Jaycee in her pain, especially because I had consented to it. A couple of days after surgery, the chest tube was removed. We stayed and watched the removal. I was fine but my husband got completely white. The next thing I knew, he was in Jaycee's bathroom vomiting. The doctor told me to attend to him while they finished with Jaycee, but he didn't want my help. We have laughed about his weak stomach for years now.

On day 4, Jaycee was discharged from the hospital. This time, the recovery was quicker, and we didn't have to deal with home oxygen. Some of the after care was easier since we had been through it before. We knew how to clean her chest, to avoid swimming for a few weeks, to avoid large crowds for a few weeks, and to give sponge baths for a short period of time. Unlike the first surgery, Jaycee didn't develop a bump on her chest. Perhaps that only happens to babies? She was back to normal in a short amount of time. She never lost any skills while she recovered; she just picked back up where she left off.

It was a relief to have Jaycee home again with a more efficient heart. Today at age 8, her heart is still monitored yearly and often checked during admissions for illnesses. Currently, Jaycee has some "mild" leaks in her heart that should be fine. The cardiologist does not anticipate any more surgeries. She is not on any heart medications. But, when Jaycee gets sick, her oxygen saturation levels do tend to fall. We have oxygen on stand by at home and generally use it a few times a year. Also, Jaycee cannot take the heat at all. I'm not sure if the heat intolerance is from her heart history or her asthma. I just know it affects our plans all summer long.

So, that is the end of Jaycee's stories of how her heart was mended.