NEW BETHLEHEM — The spirit of the holiday season rang true this weekend, as the New Bethlehem area came together to support a local girl in need of a heart transplant.
Alexa McCauley, 3, began having seizures when she was just five days old. At first, doctors believed the episodes were caused by a stroke that she had suffered during delivery.
“They thought her heart was enlarged a little bit because of the stroke,” Alexa’s mother, Kendra McCauley, said last week, explaining that a follow-up appointment three months later determined that her daughter’s complications had actually been caused by a heart condition diagnosed as left ventricular noncompaction cardiomyopathy (LVNC).
According to the National Library of Medicine, LVNC is a “muscle disorder that occurs when the lower left chamber of the heart does not develop correctly.” The cardiac muscle is “thick and appears spongy,” causing weakness and the inability to pump blood.
“Speaking as new parents, the diagnosis kind of shocked us,” Kendra McCauley said, noting that although LVNC is mostly a genetic condition, neither she nor her husband, Brady, or Alexa’s twin sister, Ava, tested positive for the disease. “Initially, we thought we were simply treating the seizures and were told that she was going to outgrow everything. Nobody was expecting anything else to occur.”
With the diagnosis confirmed, Alexa began treating her LVNC with medication at three-and-a-half months old. She responded well to all of her medications, Kendra McCauley said, and was even able to keep up with her sister with no setbacks or hospital stays.
“She had no issues whatsoever until about a month ago,” Kendra McCauley noted. She said that in late October, Alexa started getting sick and not acting like herself. The McCauleys took their daughter to the Emergency Room at Children’s Hospital in early November, with the feeling that they were dealing with more than a typical stomach bug.
“Everything was explained to us when we met with the cardiomyopathy doctor when Alexa was three months old,” Kendra McCauley said. She explained that they were told at the time that most children with LVNC can only go so long without a heart assist device and eventually a transplant. “They said they have seen kids go a long time with no issues, and others who need things immediately.”
Alexa was admitted to Children’s Hospital and placed on a Berlin Heart pump to maintain the blood flow on the failing side of her heart. She will remain connected to the mechanical heart device in the hospital until a heart is available for transplant.
“It’s tough, but she needs to get her strength back,” Kendra McCauley said. “We need her to be strong for when a heart is available.”
Noting that the Berlin Heart can only be unplugged from the wall for approximately 20 minutes at a time, she said that leaving Alexa’s room can be a bit challenging and often requires help from hospital staff.
“They have a VAD engineer and nurses that move about with us,” she said, noting that Alexa is able to move a little around her room. “For about 20 minutes we can move alone.”
When it comes to waiting for a new heart for Alexa, Kendra McCauley said they were told a transplant could be available anytime between six weeks to six or more months.
“Nobody knows for sure when it could happen,” she said.
Following transplant, she continued, Alexa could be in the hospital an additional six weeks to four months depending on how her body reacts. In addition to heart catheterizations, biopsies, bloodwork and routine doctor visits after the surgery, she will be put on anti-rejection medications and an immune system suppressant — so her body won’t try to fight the new organ.
“She has good days and bad days — which I think is to be expected,” Kendra McCauley said of how her daughter is handling her new circumstances. “She knows that she is sick, that her heart is bad and that we are looking for a new one.”
Kendra McCauley added that Alexa’s absence at home is also hard on her twin sister, Ava.
“(Ava) asks for her sister a lot,” she said, noting that the sisters visit as much as they can and FaceTime often. “We do our best to explain and help her understand.”
Although the past several weeks have been hard, Kendra McCauley said she and her family have received a “huge” amount of support from family, friends and the local community.
“We are just so appreciative and thankful for everything that everyone has been doing,” Kendra McCauley said, adding that they are constantly receiving messages, cards and donations. “It’s unbelievable and we are beyond grateful. Thank you is never going to cut it.”