The heart of the matter

Alj and his mom, Tina, have but one wish this holiday season: a new heart for Alj. Mother and son currently occupy a room on 5 Children’s, a dedicated team of medical experts keeping him stable until a donor heart becomes available for transplant. This is their story.

The heart of the matter click to enlarge Then and now: Tina recreates an image captured by the Daily Tar Heel during Alj's initial PICU stay 13 years ago.

The young man in room 5C24 is sitting upright in his hospital bed playing a video game, the picture of health. Somewhat slight in stature for a 13-year-old, Alj (pronounced “Al Jay”) Jeffries has radiant cocoa skin and warm, dark chocolate brown eyes. When asked a question, he is quick to offer a polite, soft-spoken response in a voice that is perhaps deeper than you might have expected. And almost always, he’ll flash that shy smile. It’s a smile that will steal your heart. And therein lies the irony.

To look at him, you’d never guess Alj is losing his 13-year battle against heart disease. His only hope of long-term survival: a heart transplant.

“He’s kept me calm through this whole storm,” says his mother, Tina Turner, a constant presence by his side, steadfast in her faith that the life-saving miracle for which they’ve been waiting will come in time.

Tina has held on to that faith since the very beginning of their medical journey, when at a mere 4 months of age, her bubbly baby boy became lethargic, his usual coos and giggles replaced by odd grunting sounds.

Alj’s grandmother was the first to raise the alarm. Something is seriously wrong with the baby, she thought, and took him to UNC Hospitals’ emergency department. An X-ray revealed Alj’s enlarged heart, so constrained in his tiny chest cavity, it was barely squeezing.

The official diagnosis was dilated cardiomyopathy, a disease in which the heart muscle becomes weak and enlarged, making it difficult to pump blood through the body. Although the exact cause is unknown, Alj’s family suspects his condition was genetically inherited. His half-sister, Carissa, 15 years older than Alj, also had heart disease and would later succumb to it at age 19, years after a heart transplant of her own.

Four-month-old Alj was admitted to the pediatric intensive care unit (PICU), the family told he likely wouldn’t make it through the night.

“We cried and cried and just held each other,” remembers Tina of their first stay in the PICU; there would be more in the years to come. “But then, something deep in my heart, it told me, no, he’s here for a reason. I gotta stay strong for him. I gotta stay positive for him.”

Tina has stayed strong and positive ever since—through that first PICU stay that spanned four months, through other hospitalizations they’ve had at N.C. Children’s Hospital, through innumerable outpatient appointments with Alj’s cardiologists and other specialists. Talking to Alj, it’s clear a mother’s faith and strength is contagious.

“I’m here for a reason and trying my best to stay strong for my mom and my brother and my dad,” says Alj. “Even though my heart is sick on the inside, I’m so strong on the outside.”

Alj with Dr. Buck
Alj with this pediatric cardiologist, Dr. Scott Buck. (Click to enlarge.)
Through the expert care provided by his UNC Children’s cardiology team, Alj has stayed as strong as he could for as long as he could. He’s received regular care and followed his doctors’ advice to the letter. That means Alj avoids strenuous physical activity, which includes fun things that kids his age regularly enjoy and take for granted—playing sports, riding a bike, or running. Despite the precautions taken, cardiomyopathy is a progressive disease, often leading to life-threatening heart beat irregularities, heart valve problems, blood clots, and even heart failure. 
  

In Alj’s case, his heart has taken him about as far as it can. He needs a heart transplant, and he needs it soon.

According to his pediatric cardiologist, Scott Buck, MD, an associate professor of pediatrics in the UNC School of Medicine, there are currently about 300 children waiting for a heart nationwide.

“It is inherently unpredictable,” says Dr. Buck of finding a suitable heart for Alj. “The wait can be days but most often it is weeks and even months—and each year about 50 kids succumb to illness [before receiving a transplant] due to lack of donor availability.”

The United Network for Organ Sharing (UNOS) oversees organ transplantation in the United States and is in charge of fairly determining who receives donated organs. Organs are assigned based on how sick a person is and how quickly he or she needs a new organ. Alj is classified as status 1A, the level of most critical need, but organs assignments also are based on best match for the organ donated. The organ has to be the right size for the person's body, for example, and the donor must have same blood type as the recipient.

“Alj’s heart function is severely impaired, which puts him at the highest status on the transplant list,” explains Dr. Buck. “But the good news is that, although he’s very sick, longevity after transplant is extraordinarily high, so we expect a great outlook for Alj after transplant.”

Dr. Buck encourages families to discuss and make decisions about organ donation before an unexpected life event puts them in the position of having to decide. In North Carolina, registering as an organ donor can be done simply through the Department of Motor Vehicles or via organizations like Donate Life North Carolina.

Alj with Mom
Says mom, Tina: I wish I could take his old heart and preserve it, because that heart is so precious, beautiful, warm, loving, and kind. (Click to enlarge.)
Knowing another person must die for her son to live has been difficult for Tina.
  

“I personally don’t want another’s loved one to pass away—I absolutely hate that part of it—but if a family would somehow find it in their heart to give us that gift . . .” Tina’s eyes well with tears as her words trail off. She pauses a few seconds before she finishes her thought. “Word just can’t describe the gratitude I would feel.”

Until a donor heart is found, Alj will likely remain at the Children’s Hospital, a continuous infusion of medication to help maintain regular heart contraction, medical experts closely monitoring him. After a lifetime battling an ever-worsening heart condition, Alj feels comfortable and at ease in the hospital—but Tina prays for so much more for her son.

“I just want a life for him, for him to be renewed, for him to enjoy all of the things he’s had to miss out on,” she says. “After 13 years, it’s time for him to start living.”

Editor’s note: Tina is a nursing technician on 5 East at N.C. Memorial Hospital. UNC Health Care employees wishing to donate hours to her may do so through human resources. The family has also set up a “Team Alj” Facebook page for those interested in following their journey or offering words of encouragement.

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