One year ago, BJ Engram’s 18-month-old body was covered with tubes at Children’s Mercy Hospital in Kansas City as he recovered from a heart transplant.
Now, he’s 2 1/2 years old and celebrating the first anniversary of his new heart, donated from an anonymous little girl.
Brandon Engram Jr., who goes by BJ, was born Oct. 27, 2013, and became sick with a fever of 105 the following Feb. 12.
He went to the doctor that day, then into the hospital before being airlifted to Children’s Mercy in Kansas City that evening.
Doctors in Kansas City diagnosed him with adenovirus-Myocarditis – a heart condition caused by a viral infection that lessens the heart’s function.
The left side of his heart no longer worked, so doctors hooked up BJ to an external machine called a Berlin Heart.
On the night of April 28, doctors told BJ’s mother, Briteny Carter, that his heart was failing and he would need to go on life support.
She called her mother, Willene Carter, and told her the news.
“It seemed like it was five minutes, she called me back and said, ‘Mom, they got a heart for BJ,’ ” Willene said.
Willene said the doctors tested nine child-size hearts to find BJ’s “perfect match.”
By 4 a.m. April 29, the heart arrived at the hospital after being flown to Kansas City from two hours away.
“By 7:30 a.m., he had a new heart,” Willene said.
Willene said they don’t yet know who donated the heart to BJ, but they know it came from a girl who was 1 or 2 years old. It’s up to the girl’s family to decide whether to provide more details to BJ’s family.
BJ stayed in Kansas City for the rest of the summer. He was in the hospital through mid-June and at the Ronald McDonald House until August.
For the past year, he and Briteny visited Kansas City every month with the help of Briteny’s sister and niece, who drive them to and from Wichita because Briteny doesn’t have a car.
Every other visit involves anesthesia, because doctors insert equipment through his neck or groin area to take biopsies of his heart.
When they visited his doctors April 29 – the first anniversary of his transplant – his tests looked promising, so he’ll likely be allowed to scale back visits to once every three months, with anesthesia tests twice a year.
Carla Burney, BJ’s aunt, said she’s awed by Briteny’s strength through her son’s treatments.
Carla Burney, BJ’s aunt
“You see your child like that, day in, day out, it would drive me up a wall,” she said.
A year later
BJ’s transplanted heart doesn’t get in the way of his energy – especially when he’s outside.
“I think that comes from being sheltered for so long,” Breana Carter-Harris, BJ’s oldest cousin, said about the four months he spent in a hospital last year.
Just one year after his transplant, BJ plays with his cousins and friends, runs around the house and loves to play basketball and drum on anything he can find.
“Sometimes I’m like, ‘stop, stop, you’re doing too much,’ ” Burney said.
But Burney said the nurses encourage it.
Carla Burney, BJ’s aunt
“It’s surprising that he’s so active,” she said.
At first, BJ took 11 medications a day. He’s now down to just three medications, which he has to take at 9 a.m. and 9 p.m.
He has just a 30-minute window on either side of those times to take the medicine.
“He’s the only little boy I’ve ever seen excited about taking his medicine,” Burney said.
BJ’s few limitations are somewhat unexpected.
He isn’t allowed to be around animals other than dogs and cats because the bacteria from exotic animals could potentially harm his heart. He also can’t eat grapefruit because of adverse reactions with his medication.
For now, he can’t swim in public pools, but he should be able to in about a year.
In the future, he won’t be able to drink or smoke.
Briteny, his mom, said sometimes the medications cause muscle cramps in BJ’s feet or legs, but overall he doesn’t have health problems from the transplant.
He’ll need another heart transplant when he’s about 14 years old, and again later as he grows and ages.
To celebrate BJ’s health and successful transplant, his family is throwing a “First Annual BJ Day.”
At his grandmother’s home in Wichita, BJ held photos of himself, with yardsticks attached, to decorate the yard for BJ Day. In the photos, he is in the hospital, his tiny 1-year-old body covered with medical tape that held tubes in place.
Now, he’s healthy and visitors wouldn’t guess his health history unless they saw the indented scars on the belly of his small 2-year-old frame.
On Saturday, for BJ Day, they’re throwing a barbecue party outside at Willene’s house, where most of the family lives within walking distance.
And his family is large.
Willene, BJ’s grandmother, has five children, 14 grandchildren and four great-grandchildren – all of whom live in Wichita, except for one grandchild who lives in London.
They all went to visit BJ when he was in Kansas City.
“The nurse was like, ‘Is that your family? Oh my gosh,’ ” Briteny said.
At the party, his family plans to give BJ mini-motorcycle of his own, but he doesn’t know that yet.
He became fascinated with motorcycles from his uncle, who is a member of a motorcycle group called Rough Riders.
“He’s spoiled,” Willene said.