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He is the Light in our Life – Axel’s Story

Axel, born on August 10, 2017, is described by his mom Tara as a peaceful child. The name Axel actually means “Father of Peace,” and she says he has lived up to his name. This characteristic is considered a blessing by Tara since he was born with coarctation of the aorta (narrowing in the aortic arch of the heart), bicuspid valve and ventricular septal defect (VSD), which has closed.

Three days after Axel was born, he was about to be released from the hospital to go home when a nurse noticed how heavy he was breathing and limp his arms were when she picked him up. The nurse immediately ran a few tests on the baby, which put Tara on edge. “The nurse came back by herself and asked how I was doing. I knew at that moment that something was wrong,” says Tara.

While the news was shocking, it wasn’t the first time she heard that Axel could have a heart problem. At Tara’s 25th-week checkup, they heard a heart murmur when listening to Axel’s heart. She was then sent to a prenatal specialist for further examination that morning. After taking echocardiograms (echoes) of Axel’s heart, the doctor concluded that there was nothing to be concerned about. Before leaving, Tara asked if there was anything she should have looked at again to make sure everything was fine. When the doctor reassured her that everything seemed okay, she left the doctor’s office with confidence.

“When I heard the news about Axel’s condition, I immediately felt guilty that I didn’t do enough to find this out before he was born. All of these thoughts started going through my head, and it was hard to digest,” says Tara.

Instead of going home as planned, Axel stayed at the hospital overnight and then needed to be transferred to Children’s Healthcare of Atlanta for further evaluation the next day. After he was released to go home a few days later, he came back for regular appointments to monitor his condition. Six weeks later, at his regularly scheduled check-up, Axel’s cardiologist Dr. Stevens determined that he would need coarctation repair surgery that day.

The arch had narrowed significantly, and they needed to repair it. Hearing that my six-week-old baby had to have heart surgery was probably one of the hardest things to hear,” Tara says. “I always try to see the positive side of things, but that day was horrifying.”

During the surgery, Axel needed to have a blood transfusion and was kept in recovery longer than usual because he had post op hypertension. If that wasn’t enough, his vocal cords were stretched during surgery. He was in the ICU for 10 days before being released to go home with an NG tube because of his vocal cords. He was only supposed to be on the feeding tube for three weeks, but because he had aspiration, he was on it for just over three months.

Because of his vocal cords, Axel needed to meet with a speech therapist, as well as a physical therapist. His recovery time took longer than expected, but he made a full recovery and showed strength throughout the whole process. “He is a light in our life,” says Tara. “I am so thankful for Sibley because of the way they handle the patient and families. They have compassion and are so kind; never once did I ever feel like I was asking a stupid question. There are no words for how thankful we are for their help.”

While his first few months of life were not the most common for babies, Axel was born into a family of love and support, which helped make his journey to health as smooth as possible. While he loves Tara and his father Justin, his big sister Layla is his idol, to the point where one of his first words was Layla. For parents who have a child with heart conditions and have other kids, Tara recommends making them feel included. “Make sure they feel loved and that the whole family is a unit. A lot of attention may go toward your other child, but find a way to include them in the recovery.”

To any parent that has a child going through something similar as Axel, Tara has this advice: “You’re never alone. Don’t be afraid to ask questions and surround yourself with people that will support and comfort your family. Your child is in the best hands with Sibley Heart Center Cardiology. Don’t give up, and things will get better in time. Your child will be able to live a normal life – just hold onto your faith.”

 

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