Heart transplant families help support each other

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

They are the heart of 3 West.

They are the parents and caregivers of kids who spend weeks and months in the hospital, waiting for the most precious gift – a new heart.

For all those on that journey now, many more have gone before them. Together, they lift each other up, offering advice, friendship and understanding.

Since the pandemic began nearly three years ago, isolation was a way to help keep people safe. But it also left people feeling adrift and alone.

Last year, Riley Hospital for Children social worker Leah Crane saw an opportunity to bring people together, if only virtually.

On the second Wednesday of the month, she hosts an online support group for the parents/caregivers of Riley heart transplant patients. Not just those who are waiting for a transplant, but those who have already received the gift of organ donation.

It’s been comforting and educational, for the parents and for Crane.

“They have been such a great support to each other,” she said. “I always leave feeling inspired.”

IN THE TRENCHES

LaShalle Broadnax’ daughter, Jaelyn Kinchelow, had her first open-heart surgery in 2012 at the age of 14. Now 24, she received a heart transplant at Riley last March.

“Jaelyn is still in her early stage of transplant, and we’re still going through the trenches,” Broadnax told the group. “She was in her last year of nursing school when we found out she had to be transplanted, so for her, it was a very sad time.”

Having other parents to talk to has helped ease her burden, Broadnax said.

“It’s a connection – actually knowing other people who are going through this. It’s not like we’re done now and there’s nothing else to deal with. It’s a fight we continue today.”

Mallory Aylor knows that better than most. Her son, Junior, was transplanted last year, just before his first birthday. He went home healthy and happy, and the family cherished a year of life outside the hospital.

In May of 2022, however, the toddler’s donor heart began showing signs of rejection, and he returned to Riley. Doctors listed him for transplant again in July. So, he spends his days and nights at Riley with his mom or dad by his side.

CONNECTING WITH PARENTS

Crane is grateful for the continued presence of Aylor, Broadnax and others in the meetings, as well as their efforts to connect with other parents/caregivers outside the group setting.

“Some people don’t want to come to the group, but they do want to talk to somebody who’s been through it,” Crane said. “It’s a unique thing to have a heart transplant, and not many people can understand what that’s like.”

It's not just the frightening diagnosis, but the medications, the hospitalizations, the immunosuppression and the waiting, she said.

“Parents want to meet other parents. It’s an easy way to get questions answered and feel less alone. These are some of our rock star parents. They are amazing.”

Melissa Cobb’s son, Cayce, was transplanted last April. Now 16, he is back in school and doing his best to return to some kind of normal teenage life.

Having people she could talk to who understand that transition and all the feelings that come with it has helped her feel less alone, Cobb said.

Others represented at the meeting included the mother of a young man who received a heart transplant 13 years ago, another whose granddaughter received a new heart four years ago when she was 2 years old, and a mom whose daughter has been at Riley for several months while she waits for a hero heart.

WAITING FOR THE LIGHT

“This time of year is the hardest,” said Aylor, who also has a 4-year-old daughter at home.

Not just because of the holidays, but because of the coldness and darkness of winter. It takes a physical and emotional toll.

“You know you’re not alone, but it helps to see other people who’ve gone through it, to know they’re on the other side,” she said. “There is a light at the end of the tunnel.”

Broadnax, who has been attending the meetings since early on, echoes those statements.

“This can be a lonely process to go through. You don’t hear a lot of people who are transplant recipients,” she said.

She finds herself in the middle – listening to those who have traveled this road long before her, while doing her best to offer hope to others who are just beginning their journey.

“I can look up to the ones who are getting through, and I can be inspiring to the ones coming in,” she said. “You can do this.”

Talk about inspiration. Broadnax said her daughter inspires her to live her best life, no matter the situation.

“No is not in her vocabulary,” Broadnax said of Jaelyn. “We’ve had several setbacks, and she is navigating through it all.”

Jaelyn was set to graduate from nursing school last May but ended up in the hospital in January before her transplant in March. As soon as her doctors cleared her to return to school, she was back at it, finishing her last semester this month, even shadowing a Riley Heart Center nurse.

Her hope is to one day work at Riley with the same nurses who cared for her. And while the ups and downs before and after transplant have been hard on this mama’s heart, Broadnax gains strength from her daughter’s resolve.

“There is no stopping her.”

COTA OFFERS INFO

During the December meeting, representatives from COTA (Children’s Organ Transplant Association) spoke with the group about fundraising support they offer to families on the transplant journey.

“Our sole mission is to help you raise funds for your transplant-related expenses,” explained Lauren Scott, marketing manager.

That can include money for travel expenses before, during and after transplant, as well as temporary housing, insurance deductibles, food and household expenses. Funds raised are available for as long as the patient or family needs them, even into adulthood.

COTA, which has been assisting families for more than 30 years, charges no fee for its services.

The fundraising support provided by COTA has been a big help to Aylor’s family, she said.

“We didn’t anticipate having to be transplanted again here in a year, so it has helped more than I could ever imagine. It takes the burden off your shoulders so you can focus on your child and not have to worry about how you’re going to pay those expenses.”

To find out more about the parent/caregiver heart transplant support group or a young adult heart transplant patient support group that also meets monthly, email lcrane1@iuhealth.org.