From the Heart

This is a story about a girl.

Well, it’s about a girl who was 2 years old in 1989. It’s about Heather Betliskey, that little girl who is now 33.

On Christmas Day 1989, she was at Shands Children’s Hospital in Gainesville, still in recovery after receiving a heart transplant that November.

At the time, doctors believed the East Palatka girl was the youngest heart transplant recipient in Florida. She received the heart from a Daytona Beach child, 2-year-old Meagan Rose O’Conner.

“I just found her brother on Facebook, maybe a year ago,” said Heather, who now lives in Palatka with her mother. “She was born with cerebral palsy. Her brain malfunctioned and she wasn’t getting oxygen to her brain.

“A train delayed the ambulance. By the time she got to the hospital, doctors told her family she would never be ‘her’ again and that she was on life support. They decided to donate her organs.”

Two-year-old Heather was in Shands awaiting a heart. She had been diagnosed with cardiomyopathy, a heart disease that causes the heart muscle to become enlarged.

“She had waited a year for a heart,” said Carol Cunningham, Heather’s mother. “The doctors diagnosed it and we came back home for a little bit.

“She was sleeping all the time and not eating properly. We took her to Putnam Community (Medical Center) and they said her heart was enlarged the size of a baseball. They sent us both to Shands, where they said her heart was failing. We stayed in ICU from there on.”

Cunningham remained with her daughter in Gainesville while her mother took care of Heather’s older brother. The family had moved to Putnam County two years earlier to be near relatives.

Most nights, Cunningham slept on the floor in the same room with her daughter. Some nights she stayed at the Ronald McDonald House, a home that allows parents to stay near their hospitalized children.

And then came news a heart was available for her daughter. Doctors performed the transplant that gave Heather a new heart Nov. 17, 1989. The Palatka Daily News featured a story about her transplant a few days later, with family members reporting she was doing fine and recovering in the critical care unit of the University of Florida’s medical center.

“When they said they had a heart available, they did surgery that night,” Cunningham said. “I couldn’t sleep and worried for days. They did let me spend the night with her one night.”

Cunningham remained with her daughter as she was hospitalized for three more months.

“They didn’t do heart transplants on babies until the late ’80s,” Cunningham said. “They told us she was the youngest heart transplant recipient in Florida.”

Dr. Frederick J. Fricker, who specializes in pediatrics and pediatric cardiology at Shands, remembers Heather’s story.

“At 2 years old, she was our youngest recipient at the time of her transplant,” Fricker said in an email. “Little blonde curly pigtails. She had a lot of rejection early on requiring frequent readmissions, but completely recovered.”

Cunningham said at the time, hospital officials didn’t want her to have any contact with the donor’s parents.

Heather said her donor’s parents have since died. She said she does stay in contact with Megan’s brother, Cory O’Conner of the Daytona Beach area. Attempts to reach him for this story were unsuccessful.

“A few years ago, her mother wrote to us,” Heather said. “Her brother thought it was amazing that I’m still OK. I told him I will have to have another transplant, but he’s just glad I’ve lasted as long as I have. It’s interesting to know what happened.”

Though she said she’s relatively healthy and can live a somewhat normal life, Heather does need another heart transplant. She also needs a kidney.

Because of the heart transplant, she has remained on medication throughout her life. That medication has taken its toll on her kidneys.

After her heart pressure dropped to 35% in 2018, she said a 2019 test showed her heart pressure had increased to 44% after being put on water pills. She prays it will not drop again as she awaits another transplant.

***

In Putnam County, encouraging organ donation is an important project for the Tax Collector’s Office.

Tax Collector Linda Myers said offices in Palatka, Crescent City and Interlachen are proud to share information about organ donation with customers. Would-be donors can have an organ donor notification placed on their driver’s license.

“We have averaged over 50% of our driver’s license customers choosing to ‘save a life’ for a number of years,” Myers said.

“As we recognize the importance our offices play, we are striving to move the number to 60%. Our Interlachen office surpassed the 60% mark a couple of months this year.”

Residents interested in learning more about the organ donor program can call the main Tax Collector’s Office at 329-0282.

The Organ Procurement and Transplantation Network said every nine minutes someone is added to the national transplant waiting list. And while 95 transplants take place daily in the U.S., the organization said, on average, 17 people awaiting a transplant die each day.

The organization has a six-tier adult heart allocation system in matching patients with potential donors. Because of Heather’s need for both a heart and kidney, finding a donor is even more complicated.

“They have to do them both at the same time,” she said. “If they did the kidney first, my heart could ruin it. It’s just timing and the donor would have to be donating their heart and kidney.”

***

Heather grew up going to school and graduating from Palatka High School in 2006. She could hang out with friends and go to the beach, mall or zoo. She couldn’t do anything strenuous, such as riding roller coasters or lifting heavy items.

But her weakened immune system means she can’t have any infections. The COVID-19 pandemic has forced her to be even more cautious.

“I can do some housework and get out some, but I can’t get out every day because I get out of breath,” she said. “The pandemic has complicated things because I don’t want to get close to people who don’t have masks on. I don’t live in fear, but I’ll go down another aisle in stores if someone doesn’t have on a mask. I can’t have any type of virus.”

Heather and her mother – who Heather says is her best friend – said they continue to have a strong support system with family members and friends in the area.

“I’ve stayed in contact with my best friend from school,” Heather said. “I call her my sister. She lives in North Carolina now, but we always call each other.”

It’s easy to see why the family has also become strong advocates for organ donation. Not just because Heather needs a new heart and kidney, but because of the donor who saved her life.

The family tries to spread the message to anyone they come in contact with that organ donors save lives.

“It’s very important to get the word out,” Cunningham said. “One person who donates their organs can save at least eight lives.”

Until the time arrives when she can receive a new heart and kidney, Heather and her mother remain thankful for each day. Friday will mark 31 years since they spent Christmas together in the hospital as Heather recovered from the transplant.

Her mother remembers Christmas presents being given to children from donations while she was staying at the Ronald McDonald House.

“It’s hard, but we’ve been truly blessed,” Cunningham said. “And she’s there for me. I was in a tragic car accident and she took care of me right back. 

“We’ve got to have faith. God prepares you to let you know the road ahead. We just have to listen.”

Heather thinks about her organ donor often and will continue to talk about organ donation “just because I’m thankful for what the family did.”

The gift of a heart from the little girl has given Heather more than 11,000 days of life since that 1989 transplant.

Though she doesn’t know when it will happen, she is confident she will receive a new heart and kidney.

“I haven’t been through it like a lot of people because I didn’t really have any rejections as I got older,” Heather said. “I’ve been really blessed.

“I can’t say what’s going to happen. Only God has our plans written down. I put my trust in him in knowing he has a plan for me. God has prepared me.”

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