WF mom shares story during Pediatric Transplant Awareness Week

Raylan is getting a second chance at life after a heart transplant.
Published: Apr. 27, 2022 at 6:56 PM CDT
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WICHITA FALLS, Texas (KAUZ) - Bonnie Bolin didn’t know anything about pediatric transplants when her son Raylan was born at United Regional in 2020.

“I asked the doctor, ‘Can you do transplants on babies?’ He said yes. I said, ‘Don’t you want to wait until he’s bigger?’ He said no,” Bonnie recalled.

Bonnie’s second pregnancy had been difficult, but doctors weren’t sure exactly what was wrong. When Raylan was born, they quickly realized the problem was more serious than they’d realized.

“Within hours of the birth, he was gasping for air like a fish out of water,” said Bonnie. “He could not breathe, couldn’t catch his breath.”

Raylan was immediately placed on a ventilator; a flurry of tests showed that an obstruction in the left ventricle of his heart was preventing blood flow to the rest of his body. A deformed valve was also causing severe regurgitation. Raylan was care-flighted to Cook Children’s Medical Center in Fort Worth.

“They kept mentioning transplant and I was not wanting to discuss it because it’s a difficult thing to deal with,” Bonnie said. “My husband and I were hoping his heart would improve, that its function would improve. But it didn’t.”

Raylan was taken via ambulance to Dallas Children’s Hospital for a transplant evaluation, and Bonnie was plunged into the world of pediatric transplants. Despite being a nurse, she knew very little about the subject.

Right now, around 1,700 children are waiting for transplants in the United States. It’s a hard topic to talk about because pediatric organ donations can’t come from adults. For Bonnie, it meant that every day she was hoping for a way to save her child while knowing it would mean tragedy for another family.

“It’s just this mixed feeling because this baby that’s going to help us, and this family that’s decided to make this selfless decision, they’re going to be suffering… while we are, you know, having hope.”

The pain associated with pediatric transplants may be one reason that the process is even more intensive than with ordinary transplant procedures. Parents meet with many departments and specialists -- Bonnie can list “palliative care, social work, the surgeon, infectious disease, the transplant cardiologist, psychologists” off the top of her head -- but they too have to be evaluated for risk of burnout. The transplant process doesn’t end once an organ is donated; the recipient will always have a compromised immune system, and will have to follow rules like not eating raw beef or not getting into certain kinds of water. But the young age of pediatric transplant recipients means responsibility and medical care fall on their parents.

“They want to make sure you’re going to get them to appointments, you’re able to make sure he has medication,” Bonnie explained. “Because parents get burned out taking care of medically complex kids, I mean, it can be rough, so they’re evaluating you, making sure you’re a good candidate to take care of this heart. It’s such a gift to give, and they want to make sure we’ll take care of the gift.”

Raylan was placed on the transplant list as 1B after his evaluation. 20 days and at least one near-death experience later, doctors successfully petitioned UNOS to have him bumped up to 1A, the highest priority on the waiting list, due to medical urgency. And then they waited.

“His health continued to deteriorate. It was pretty painful to watch. Every day, just, he, he was suffering, he had no quality of life,” Bonnie said.

In addition to waiting in the hospital with Raylan, Bonnie and her husband had to contend with the real world. They had agreed to stay in Dallas for three months post-operation if Raylan got a transplant, and they stayed in 4-5 hotels, apartments and AirBnBs before finding a house that could serve as a home base.

“It’s hard. They tell you this before you go on the [transplant] list, and they want to make sure this is the life that you’re choosing, this is the life that you want,” Bonnie said. “But for me there was no choice because, my baby, I wanted him to live.”

Not knowing how long the process would take, the couple made the hard choice of leaving their 14-year-old son Fisher back in Wichita Falls with his grandmother so he wouldn’t be uprooted from his school. COVID protocols meant no family was allowed to visit, and Fisher had never met his brother.

“It was horrible, not even being able to be with my husband. I was recovering from a C-section, trying to make sense of what was happening,” Bonnie said. “It was very lonely, being in the hospital and not being able to share with family and then the thought of if we lose him, they don’t even get to meet him.”

Despite the family being unable to visit Raylan, they decided to gather in Dallas for Thanksgiving; Bonnie’s sister lived in the city, and it was a chance for Fisher to see his parents.

And then, at 9 p.m., the call came.

“It was some number I didn’t even recognize, and I almost didn’t even answer it,” Bonnie said. “It was incredible. My husband was sobbing on the bed.”

She paused for a moment. “There’s this other part of it, that this family is having the worst day of their lives right now, and we’re excited because it’s the only hope that we have.”

“It’s amazing that the family in their most difficult time would choose to be selfless, and they would choose to donate… because they’re giving up their last moments with their family, with their loved one. It’s truly incredible that they did that.”

Raylan went into a 7-hour surgery on the night of Thanksgiving. He was three-and-a-half months old.

The transplant procedure is dangerous. In her months of waiting, Bonnie had met and grieved with other mothers whose children hadn’t made it. She still keeps in touch with many of the people she met in the cardiac care unit: “They’re the only ones who fully understand what it’s like,” she said.

Raylan’s recovery process was far from easy. Complications saw him on life support until the Sunday after his surgery; his kidneys almost failed shortly afterward. But eventually, they were able to leave the hospital; then, they were able to return to home to Fisher and Wichita Falls. Doctor visits became further and further apart. Raylan’s personality, previously seen only on “good days,” began to emerge more frequently. Now 20 months old, Raylan is a happy baby.

“He has a lot of personality and a lot of spunk. He’s not walking yet, but he scoots all over the house on his butt,” Bonnie said.

Raylan now has the chance to lead a life he never could have imagined before because of another family’s sacrifice. Bonnie has returned to nursing in addition to raising awareness of pediatric transplants.

“A year and a half ago, we would just pray that he would survive one more day, and hope that a family would make the decision to donate,” Bonnie said.

Raylan is pictured with his mom in this undated family photo.
Raylan is pictured with his mom in this undated family photo.(addisphoto | Bonnie Bolin)

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