The parents of a 2-month-old baby in Georgia are anxiously waiting for a heart transplant that could save their daughter’s life.
Avery, born on Feb. 23, has spent every day of her short life in the hospital, her father, Steven Moore of Augusta, told Fox News on Thursday.
The young girl has multiple ventricular septal defects, or numerous holes “in the wall separating the two lower chambers of the heart,” according to the American Heart Association. She has also been diagnosed with Supraventricular tachycardia (SVT), more commonly known as an irregular heartbeat, and cardiomyopathy, a disease that makes it difficult for the organ to pump blood to the rest of the body.
Alison, Steven’s wife and Avery’s mother, carried Avery for 41-weeks. The couple was under the impression that their baby daughter was “perfectly healthy."
But the day after she was born, Avery turned blue. She was transferred to the Children’s Hospital in Augusta, where the family is from, then to Children’s Healthcare of Atlanta. Shorty after, Avery’s parents learned of their child’s severe heart conditions.
“It was a shock to us,” Steven, 35, said.
On Tuesday, Avery underwent a risky procedure to close the holes in her heart. The procedure, which typically takes two to four hours for older patients, took Avery’s doctors nearly seven hours to complete.
While the procedure was a success, it’s not a cure-all. Steven described it as a “bridge to get us to the transplant,” adding that it was a way to buy Avery more time.
According to the Children’s Hospital of Philadelphia, it can take months to years before a heart becomes available. And even then, not just any heart will do. According to the hospital, “an adult donor heart cannot be transplanted into an infant because the infant's chest is simply too small to accommodate the large organ. Children must wait for an appropriately sized organ to become available.”
Roughly 2,000 children under the age of 18 in the U.S. are on the national heart transplant list.
Alison, 31, and Steven have spent everyday in the hospital with Avery, hoping at the end of each day that the next will bring good news. But that much-anticipated call has not yet come.
In the meantime, the couple, who are celebrating their first marriage anniversary next month, “wake up, go to [Children’s Healthcare of Atlanta] and sit with her,” Steven said. “We want to make sure she knows that we’re there for her.”
“It’s pretty irrational, but we sit around [with the hope] that a heart with show up, and they won’t have to come and find us,” Steven added.
Unlike parents of healthy newborns, Steven and Alison rarely get to hold their daughter. And when they do, it’s only for a few minutes.
“When we hold her, we treasure that moment,” he said. “It makes the smaller stuff so much more important.”
The family hasn’t been back to their home in Augusta since Avery was born; Steven said family and friends have been taking care of their two dogs and other responsibilities.
The support the couple has received has been “overwhelming,” said Steven. Strangers have reached out to them with words of encouragement via Avery’s Facebook page, others have donated to their fundraiser. Steven said he and his wife have also “fallen in love” with the nurses at the hospital.
“They love her as much as we do,” he said.
But the most significant source of support the couple has found is from each other.
“It has brought us closer together as a married couple. When she [Alison] breaks down, I find myself being stronger in those moments,” he said, adding that his wife has done the same for him when it all becomes too much.
Steven and his wife acknowledge “what it would mean” for another family to give Avery their child’s heart. But when that day comes, “it’s an opportunity for their heart to live on through our daughter,” he said. “It would mean so much to us.”