WARREN, Maine — Christmas for 12-year-old Lucas Upton and his family will be celebrated this year at Boston Children’s Hospital. But for his family, this is a cause for joy, as the boy received a heart transplant Sunday.
Lucas is recovering well, his mother, Pennie Gamage, said Wednesday from the Boston hospital. He was scheduled to be taken off a respirator later in the day, she said.
The family’s ordeal began in November 2014, when Lucas began feeling bad and had flu-like symptoms, Gamage said. When he started to complain of pain in his chest and back, she took him to the Miles Campus of LincolnHealth in Damariscotta, where a chest X-ray revealed an enlarged heart.
Lucas then was sent to Maine Medical Center in Portland, where he was diagnosed with dilated cardiomyopathy, which, according to MedicineNet.com, is a condition in which the heart’s ability to pump blood is decreased because of an enlarged and weakened left ventricle. He spent more than two weeks in the hospital before being sent home with medications and follow-up visits scheduled.
His condition seemed to improve and he spent a busy summer before he began in late August to again feel tired and exhibit flu-like symptoms.
A medical check found that he was suffering from end-stage heart failure, Gamage said, and he was placed on a waiting list for a heart transplant.
“His heart was in really bad shape,” Gamage said.
While awaiting the transplant, doctors scheduled surgery to implant a left ventricular assistance device to help pump blood in his heart. But Lucas came down with pneumonia and was on a ventilator for 21 days, which delayed the surgery until Sept. 8.
When he recovered enough from that surgery, the family went home to Warren, knowing there could be a long wait for a heart.
“We regained some normalcy in our life. Lucas went back to school for 12 days,” Gamage said. He is a sixth-grader at the Warren Community School.
Then on Saturday afternoon, the call came from the Boston hospital.
“Lucas was excited and nervous,” she said.
The family was not given any information about the donor, but is grateful for the heart and the success of the surgery, which took a little more than eight hours to complete, Gamage said.
While her son recovers, the single mother of two is staying in hospital housing in Boston and her sister is caring for her 3-year-old daughter Gabrielle.
Gabrielle will be traveling down to spend Christmas with mom and Lucas in his hospital room. There will be a few gifts to open, Gamage said.
Support from the community and her family has been remarkable, said Gamage.
She has had some medical problems herself. Gamage said that when Lucas was at the hospital in November 2014, she was diagnosed with pulmonary hypertension and had to have surgery to remove blood clots from her legs and lungs.
Lucas’ medical care is covered by MaineCare, but a GoFundMe account was established Monday to assist the family with related expenses. Gamage said Wednesday that on top of Lucas and her health problems, the family needs to move out of the apartment they are renting in Warren. The GoFundMe site states that the residence has mold, which would make it medically unwise for the boy to stay.
Thirty-one people have donated a total of $1,915 since the fund was created.
Gamage said she has packed up their belongings but has yet to find a new place. She does not know where they will go once Lucas is able to return home in several weeks.
In the meantime, she said the family plans to enjoy their Christmas in Boston.