NEW BETHLEHEM – An early Christmas gift arrived for the McCauley family when they heard on Dec. 14 that a heart was available for their 3-year-old daughter, Alexa.
Alexa McCauley, a New Bethlehem area girl who was diagnosed at three months old with a chronic heart condition, reached a critical stage in her battle with left ventricular noncompaction cardiomyopathy (LVNC) when physicians determined in November that she was in need of a heart transplant.
After several agonizing weeks, the family received the call they were waiting for at approximately 11:20 p.m. on Dec. 14 — that a donor heart was available.
“That’s definitely a phone call you’re never going to forget,” Alexa McCauley’s mother, Kendra, said last week of being awoken in the middle of the night to a phone call from her daughter’s doctors explaining that a heart was available. “We were happy and scared, [and] immediately called all our family and friends.”
While doctors could not give the family a definite timeline of when the surgery would take place, McCauley said the doctors reassured them that they felt the heart was a good match for Alexa.
“They never say it’s a perfect match because obviously a perfect match would have been her own heart,” McCauley said last week. “They said it’s a good match for her, [and didn’t] see any reason to pass on it.”
After a long day of waiting at Children’s Hospital, McCauley said that she and her husband, Brady, left Alexa in the operating room holding room about 1 a.m. on Dec. 16. The donor heart arrived at the hospital about 3:30 a.m. and the family was able to see Alexa post-surgery several hours later at 9:30 a.m.
“We know that everything went well during the surgery and there were no complications,” McCauley said, adding that when they did get to see Alexa, she was still intubated but was eagerly trying to speak to them. “That was amazing and scary because she had just undergone such an incredible surgery.”
After the operation McCauley reported that her daughter’s recovery has been going remarkably well, despite a recent diagnosis of RSV.
“It’s an absolute miracle. She was up walking around by day four,” she said, noting that Alexa even enjoyed a Snickers bar that same day. “She’s been doing absolutely amazing.”
In fact, Alexa was discharged from the hospital last Thursday, and the family is currently staying at the Ronald McDonald House near the hospital until Alexa is cleared to go home.
“They discharge you to here so that should something occur we’re right here,” McCauley said, noting that staying close to the hospital is also easier for all of Alexa’s follow-up appointments.
Alexa had her first biopsy post-surgery on Monday, Dec. 30, during which time her sutures and central line were also removed. She also received a different kind of an IV to help her over the next week or so.
“The biopsy results all showed no rejection which is amazing,” McCauley said of the appointment, noting that Alexa will have another biopsy in the coming weeks.
“As time passes they’ll slowly get phased out,” she said of the appointments, adding that Alexa will also have to do some physical and occupational therapy, which is standard procedure after a transplant.
In addition, McCauley said Alexa will also have to continue cardiac catheterizations — which should also eventually space out over time — and remain on anti-rejection and immune suppressant medications, as well as an antibiotic for the rest of her life.
“All of her doctors are just absolutely amazed at how well she’s doing,” McCauley continued, explaining that the hospital staff saw Alexa at her worst. “They do say kids usually bounce back better than like adults would. They just can’t believe how well she’s doing.”
Now with the surgery behind them and recovery underway, the family is turning their attention to everyone who has played a part in Alexa’s gift of life.
Their first thoughts were of the donor’s family.
“We know nothing of where the heart came from and we know nothing about the donor family,” McCauley said. “As of right now, though, we do plan to reach out to them. The first step with that would be a letter.”
McCauley said her family also wanted to offer “a huge thank you to our community and anybody who has reached out to us with Christmas cards, prayers and everything.”
They are also extremely grateful to Brady McCauley’s employers and fellow workers at Clarion Boards who donated enough days for him to still be at home with his family.
“Between the management making arrangements and the guys donating some of their own vacation days…that in itself is just amazing,” McCauley said. “I don’t know if I could do this all by myself.”
Looking into the future, McCauley said that Alexa should be able to live her life with few restrictions, and the new heart will continue to mature with her as she grows.
“If all goes well, she should make it into her late 20s or maybe 30s before we’d be looking at transplant again.”