ST. LOUIS — Imagine having a four-year-old son who seemed healthy and normal. Suddenly, your child has trouble keeping food down and then loses his appetite completely. You take him to the hospital, and he’s diagnosed with a bowel obstruction. You then find out it’s a misdiagnosis; your child’s heart is failing, and he’s been placed on the donor list for an immediate heart transplant.
“The news hit us like a ton of bricks,” said Makiyah Mosley-Flye. She and her husband, Antonio, live in Cape Girardeau, Mo. They have two children: a 12-year-old daughter, Adrianna and Kyndric who’s now 8 years old.
Makiyah and Antonio were expecting a quick procedure after Kyndric was transported by ambulance from St. Francis Medical Center in Cape Girardeau to St. Louis. Fortunately, they were sent to one of the best facilities in the nation for pediatric heart transplants.
In May of this year, St. Louis Children’s and Washington University’s Heart Center was recognized for performing its 600th “heart-only transplant”–making it the first pediatric transplant center to achieve that milestone in the United States and third in the country for pediatric and adult heart transplants.
“We have been doing pediatric heart transplants since 1984,” said Dr. Janet Scheels, medical director of the heart transplant program.
“We are one of the earliest centers in the country doing pediatric heart transplants,” Scheels continued, “our administrators have been involved in the beginning stages of (determining) who could and could not safely receive heart transplants. That work set us up to be leaders in the field.”
At Children’s Hospital, Kyndric’s parents learned that Kyndric had Kawasaki disease (KD), an acute febrile illness that can cause complications to coronary arteries and inflammation of blood vessels.
“Kyndric, who we call ‘K-Fly,’ would have died without a transplant,” Scheels said.
What was expected to be a one-day procedure for a bowel obstruction turned into an almost 4-month vigil for Kyndric’s parents as they awaited a new heart. Makiyah and Antonio alternated days and nights at the hospital. Their daughter, Adrianna, stayed with Makiyah’s mom who lived about 30 minutes from Cape Girardeau.
Makiyah recalled her feelings as she nervously listened to constantly beeping monitors that displayed her son’s blood pressure, heart rate and other vital signs. She recalled the horrific day when she was rubbing her sleeping son’s head and the monitors started beeping rapidly.
“The entire team flooded the room; there had to be about 20 people,” Makiyah remembered. “They had to use the defibrillator to shock his heart back into rhythm. The moment was scary, but they moved fast and effectively.”
Finally, four months after Kyndric was confined to the hospital, the couple received word that a heart was available. It was a bittersweet moment.
“There were days when we thought we weren’t going to receive one (a heart),” Makiyah explained. “We were also praying and wishing for a family who were considerate enough and selfless enough to give us the opportunity to keep our son with us. We weren’t wishing death upon anyone, but we knew that was necessary to receive one.”
Dr. Scheels said she often tries to help families like the Flye’s navigate the reality of their child’s survival predicated by another’s death.
“It’s a question I get a lot from families waiting for transplants. I tell them they’re not causing the tragedy. They’re simply making something good out of it.”
Scheels went on to explain how many families find peace in organ donations.
“To know something good has come out of the absolute worst day of their lives is the most selfless thing anyone can do. It is a positive experience for them.”
Scheels said that about a third of potential transplant patients don’t get hearts in time. Therefore, she implores even more people to consider organ donations.
“We do a lot of good work, but we don’t have enough hearts,” she said. “You never want to think about anyone in your family being in a position where they can be a donor but, really, it’s something to think about.”
During the procedure, the parents were given updates through the “EASE” app, a device that allows family members to receive “in-the-moment” texts, photos and videos during surgery. Families can see procedures like doctors making an incision in the chest, separating the chest bone, opening the rib cage, removing the old heart, sewing the donor heart into place, then attaching blood vessels.
Antonio confessed it was hard for him to watch.
The surgery, Makiyah said, lasted about 12 hours. It was heartbreaking to see her son; pale, covered in bandages with “tubes everywhere,” she said, after the surgery. But, after a few weeks, Makiyah said Kyndric was up and about and seemingly healthy and strong.
The optimism lasted for about four years.
During what Makiyah described as a “routine checkup” in August 2021, doctors detected that Kyndric’s arteries were showing signs of deterioration again. A stent was placed in his heart, but Makiyah said they knew it “was only a band aid.” Their son would need another heart.
Dr. Scheels recalled how she felt sharing that excruciating news.
“That’s the part of my job I don’t like,” Scheels stressed. “To go back after the first transplant and say, ‘we need another one’…well, it was devastating.”
“Here we go again,” Makiyah remembered thinking. But, she added: “We were positive. We’ve been here before and we’ll make it through again.”
After three weeks, in February 2022, Dr. Scheels informed the couple that they’d found “a perfect match” for Kyndric and he’d have to go into surgery immediately. The operation was another success.
Dr. Scheels confessed that it’s impossible not to become attached to her patients. After 30 years, she still hears from patients who are now grown, have lived “normal” active lives, and, some, have children of their own.
Scheels said she’s still “fascinated and humbled” by the progress made in heart transplants. She cited Kyndric’s case as a “good example.” While waiting for a heart, the boy was placed on a ventricular assist device (VAD), a machine that helps pump blood from the lower chambers of the heart to the rest of the body.
“It’s only been in use for the past 15 or so years,” Scheels explained. “Prior to that, we would not have been able to save him. The technology is growing at such a rapid pace and it’s a field that’s continuing to grow.”
Chances are Kendric will need another transplant in the future. Scheels described what is defined as “half-life graft” survival which is the time from transplant to graft failure which is typically 15-to-18 years. This is because the body's constant immune response against the new organ slowly damages the transplanted tissues or organs.
Kyndric is a child of few words. Science, baseball, dinosaurs and video games are his favorite things. He shares his dad’s passion for baseball and studying fossils. He said his favorite baseball team is, of course, the Cardinals. He loves pterodactyls, not to be confused with the Tyrannosaurus “who eats other dinosaurs.”
Asked what he wants to be when he grows up, Kyndric answered without hesitation: “A cop. I want to stop robberies and put them (criminals) in jail, like Batman.” His Marvel comic favorites are “Captain Marvel, Hulk and Iron Man…I think that’s all of them.”
It’s been a year since Kyndric’s last transplant. Although Makiyah said “pins and needles'' are the new normal for their family, their son is doing well.
“He’s doing awesome,” Makiyah stressed. “He has a good appetite, he’s very inquisitive…he’s just like a normal kid.”