Kaidence's CHD Story

By: LaShonda Harris

After years of trying, I was excited to learn that I was pregnant. Being a mother has always seemed like the biggest honor and I would soon be able to share that honor. My pregnancy seemed normal - jitters making it past the 12-week mark, morning sickness - everything I read about. I knew I was high risk due to my age, however, I was soon going to learn that there would be more to it.

It was at 24 weeks pregnant, my boyfriend (Dad, Eric) and I went to our bi-weekly Maternal Fetal Medicine doctors appointment. During our ultrasound, the doctor noticed an irregular heartbeat for our baby. Within 2 weeks we were seeing a pediatric cardiologist at Levine Children's Hospital in Charlotte, North Carolina. I will never forget that appointment. The doctor told us that our sons heart has VSD - a ventricular septal defect. We were both scared and nervous, but the doctors told us that a large number of children don't require surgery within the first 5 years, and there's a chance the holes will close on their own. If not, we will have to have surgery to repair VSD. At that moment, we made a plan delivery and will have an echocardiogram performed to check his heart.

On December 6, 2021, our first born child, Kaidence, was born at 36 weeks, 6 pounds 4oz. Almost immediately, the nurses and doctor noticed his breathing was really fast, so he was sent to the NICU for monitoring. Hours later, the echocardiogram was performed. We soon found out that he was born with 3 VSD holes, not two. Two were so large in size that his breathing wasn't stable; he was constantly panting as if he had just finished running a race. On day 6, upon arriving to the NICU to see our sweet baby Kaidence, we were pulled to the side by the NICU charge nurse and attending physician. They informed us that a nurse doing rounds noticed that his legs were extremely cold to the touch. An echocardiogram was done, and it showed that the main artery in his heart, his aorta, was almost completely closed. The medical term for it is Coarctation of the aorta. They informed us that he would have to have open heart surgery immediately. We were devastated, to say the least. This was a curveball thrown at us here is our 6 lb newborn baby boy having to have his first surgery before I had ever been able to hold him.

Before we knew it, Baby Kaidence was air lifted Levine Children’s Hospital, where he would spend the first weeks of his life. Almost immediately, Kaidence was sedated, placed on a ventilator, and air lifted to Levine Children's Hospital in Charlotte NC. As you can imagine, we were distraught, but also encouraged. We knew it would be a fight, but we knew he was a fighter. 

We beat the helicopter to the hospital and met with the surgeon, who gave us reassuring words that this wasn't normal but also wasn't uncommon either. This was the beginning of a long road for us, but we were ready for the road less traveled. Of course, there was something that seemed so unfair about this. We never question God because we're all firm believers in his will. With that said, how could a person be so small and beautiful, so innocent, quite possibly deserve this? Not only does he have to have open heart surgery, but he still has the VSD's to worry about. That night, my younger sister (Jasmine) assembled a prayer call with 81 of our family and friends and sent prayers up for the road ahead. The next 6 days were sleepless and stressful. Thankfully, we were given a place to stay next door to the hospital at The Hospitality House of Charlotte. Our family were angels in disguise and beacons of strength, but we were left in wondering where this was going.

December 16th was the day of the surgery. We woke up early surgery, as it was set at 6 a.m. We got to the waiting room and anxiously begin praying again. At 8:27 a.m., the doctor walked in telling us the surgery was a success, but we had to wait to see him. When we got to him, he was breathing slower and looking healthier already. After a couple of days, we could go home, after some training with his NG tube and medication routine. Dad had to get back to work soon, even though he was eager to spend time with his son. That weekend, Dad went home only to contract COVID-19. That next day, I myself ended up being hospitalized for postpartum preeclampsia. Mind you, this was on the week of Christmas! We ended up celebrating Christmas, all three of us separately.

Days later, Dad and I finally recover went straight to our sons bedside. Then finally the day came we were all discharged to go home - 34 days later.

Three weeks later we followed up with our Pediatric Cardiologist to check on the VSD and she noticed that the holes were not closing like they are supposed to, and he was not gaining weight the way that he should. We were left with no choice but to get a permanent feeding tube placed, and also learned that he would have to have open heart surgery again. The surgery will have to happen before he turns 6 months of age. 

We decided that day to go ahead and switch his feeding tube to a G Tube to eliminate any complications with his upcoming heart surgery being that he still has a hard time eating and breathing at the same time. That took place on February 10th, which is where we're left today, waiting on his second heart surgery while being thankful for our blessing. And thankful for our family and medical team! ❤️