Myra was worried that Garrett would “be gone” from Xander, but we assured her that Garrett would always be with him.
When the doctor said, “heart defect,” it was like being hit by a Mack Truck. My husband, Jonathan and I knew something was wrong when the technician was taking such a long time, then went to get the doctor. Our doctor was kind and immediately called a Sibley pediatric cardiologist to confirm Xander’s diagnosis. While we waited for them to arrive, Jonathan and I took a walk. We called the grandparents and my sister, and we all cried, not knowing what to expect.
Our cardiologist confirmed that Xander had truncus arteriosus and found out about his other congenital heart disease (CHD), aortic arch interruption. They drew us a very basic picture (and we still have it) and explained what it was and what we could possibly expect. It was surreal! We went home and did our research and reached out to anyone we knew, not knowing anything about Sibley. I was able to talk to the head surgeon at Miami Children’s Hospital and he said we were in excellent hands with Dr. Kanter and Children’s Healthcare of Atlanta (CHOA). That made everything much easier.
We were told Xander would most likely be blue and not cry when he was born, but he was pink and screamed like a maniac! After an overnight stay at Piedmont, he was transferred to Egleston. He had his first surgery at two days old and they closed his chest a week later. He had to be extubated and re-intubated a few times and was at Egleston for 30 days before we were finally able to go home. At three months, he was showing signs of congestive heart failure. Dr. Videlefsky sent Xander to the Cath Lab at CHOA to get the first of eight catherizations with angioplasties and stent implants that he would need over the next five years.
Sibley Heart Center has been the best place for us to get the help that Xander needs. The doctors, nurses and specialty staff are beyond amazing. When Xander was born we lived up in Canton, GA, and it was worth the drive-in town to see the best. Now, we live in East Cobb. It’s easier to see doctors, and there are a lot more offices than there were 14 years ago!
We could not have gotten through any of this without the Kids at Heart group. We’ve met the most amazing families and have created lifelong friendships and a wonderful support system. When we met with Dr. Kanter before Xander was born, I asked if there was another family I could talk to. We met a family whose truncus baby had been born three months before. They were a huge support for us. I told the nurse that if another family needed support, we would be more than willing to help them out the way we had been helped.
That started my journey on the mentor program, which officially began many years later. I have been a mentor to numerous families and have seen the successes and also the loss. The first family I counseled are still great friends of ours today, even after losing their precious daughter 14 years ago when she was 4 months.
We have had wonderful experiences along Xander’s journey. One in particular was meeting the donor family of Xander’s heart valve. We knew Xander would receive a human tissue valve to create his aorta and connect his aortic arch, but we never processed that a child had to die in order for the valve to be in the tissue bank. I wrote thank you letters to the donor families through Life Net, never expecting to hear back from anyone. But two weeks later, I heard from Myra. Her son, Garrett, lost his battle with diabetes at the age of 11. We wrote letters back and forth, and when Xander was two, we drove to Concord, North Carolina to meet her and her family.
Myra sees Garrett in Xander. She entered a film competition about organ donation and talks about Xander in the movie. When Xander was having his second surgery at five and a half, we knew he would get a cow valve. Myra was worried that Garrett would “be gone” from Xander, but we assured her that Garrett would always be with Xander. Garrett was the reason that Xander had made it so far! Myra even came to visit us a few months before that surgery, and we still keep in touch today.
I now sit on the board of Children’s Heart Foundation (CHF) and am the liaison between CHF and CHOA. I coordinate activities that we do for CHF that can benefit the hospital or bring the two organizations together for events.
Xander is doing great today! He is in 8th grade at The Howard School where his learning disabilities, including Tourette’s, are taken care of and he is in a safe environment. His teachers are amazing with all his medications, and they know all about his conditions. He has played on the soccer and basketball teams and has taken school trips away from home. His basketball team made it to the finals and came in second place with Xander making a 3-pointer. Xander is excited to attend high school in the fall.
Xander loves monster trucks and went to Monster Jam at the Mercedes-Benz Stadium. The Monster Jam world finals are in Orlando this year, so it is a huge goal of his to attend in May. He loves video games, playing in the yard with his brother and caring for his two dogs, Izzy and Momo. He’s just a regular kid who happens to have a special heart and is blessed to have an amazing hospital and doctors who can take care of him right here in his home town.
We attend the Congenital Heart Walk every year and he goes to Camp Braveheart, where he can spend a week in the most wonderful environment with 250 kids just like him. On Xander’s “heartiversaries,” we make donations to the pantry. The CHD world has become a part of our family in many ways and we are proud to continue to support the community in any way we can!