‘He’s a fighter:’ Heart transplant brings hope

Mar 18, 2022 By CJ HADDAD 11 min read

A 3-year-old Cape Coral child named Bryson has overcome and persevered more than most do throughout a lifetime. Bryson recently received a new heart, one he needed due to the diagnosis of Hypertrophic Restrictive Cardiomyopathy.

His family, the Gardners, along with the assistance of the Children’s Organ Transplant Association, is fundraising to help carry the burden of medical bills.

Ashly and Brandon, a since-teenage-love husband and wife, welcomed Bryson into the world on Feb. 15, 2019. A placental abruption at just over 35 weeks resulted in the near death of both Bryson and his mother, as they both lost an abundance of blood. Bryson was taken to the Newborn Intensive Care Unit where he stayed for 10 days undergoing blood transfusions.

“He’s been a little fighter ever since I was pregnant,” Ashly Gardner said. “From the get go.”

While in the NICU, Bryson underwent an echocardiogram — an ultrasound of the heart — after the neonatologist heard a loud murmur during their examination. The first test showed that Bryson had numerous small holes between his ventricles. The cardiologist told the family that can be normal with premature births, and that they should close in the next year. Follow-up tests were scheduled. Thankfully.

“If it weren’t for the NICU, we probably wouldn’t have been able to detect this heart condition he has,” she said.

By June, all of the holes in Bryson’s heart had closed, but there was other disconcerting news to be delivered.

“That was when they noticed that his left atrium was just not looking correct, it was looking a little dilated and just not normal,” Ashly said.

It was in December of 2019 when Bryson returned to the cardiologist for yet another echocardiogram, and his parents were told what no parents want to hear.

Bryson’s diagnosis of Hypertrophic Cardiomyopathy, a rare condition, especially in children, that results in abnormal thickening of the walls within the heart. Hypertrophic cardiomyopathy is the most common cause for sudden cardiac death in people under the age of 30.

“Most of it was all on the left side of his heart,” Ashly said. “What happens is all of that extra tissue just starts invading the left ventricle. It’s not that the heart grows with it and makes room, it starts taking up that space within that chamber. So, as he progressed, that extra thickness started taking up the space where the blood normally fills in, so his left ventricle started only being able to hold very minimal amounts of blood.

The Gardners then reached out to Joe DiMaggio Children’s Hospital following the diagnosis, as they specialized in this form of cardiomyopathy. At the Christmas Eve appointment, doctors said he was “stable” for the meantime, and that he would routinely come in for follow-ups. Ashly and Brandon were also told that Bryson’s age of diagnosis raises the probability of needed a heart transplant due to complications the disease can cause.

“We were just watching it very closely,” Ashly said. “We traveled back and forth for appointments.”

When Bryson was around 18 months old, he contracted a virus that attacked his bone marrow, which eventually stopped producing red blood cells. He became anemic and needed blood transfusions. Ashly said the virus ended up being a blessing in disguise, because doctors noticed his heart was struggling severely. Bryson’s left atrium had become grossly enlarged in a very short amount of time — something doctors said was inconsistent with Hypertrophic Cardiomyopathy. It was possible Bryson was developing a secondary form of cardiomyopathy as well.

Bryson’s parents and doctors agreed to continue to just watch closely over the next couple months, as the only way to test for a secondary form of cardiomyopathy was though an extremely invasive procedure involving a heart catheter.

In April of 2021, Ashly and Brandon noticed a difference in their son.

“The house was set at 73 degrees, and he’s just pouring in sweat,” Ashly said. “He’s pale, and he would not get up off the couch, would not get up to play, and was not eating normal. That’s when we agreed that now, he’s showing his symptoms, so we went ahead and moved to (UF Health Shands Cancer Hospital) for transplant purposes.”

On May 11, Bryson underwent the heart catheterization, and the results showed that he had severe Restrictive Cardiomyopathy on top of his moderate Hypertrophic Cardiomyopathy. Restrictive Cardiomyopathy causes the heart to become stiff and rigid — unable to relax and refill with blood.

“No medication is proven to work with it or anything like that, and doctors said because of how severe his pressures were, if we were just to sit and watch and kind of wait, it would eventually end up ruining his lungs and he would need a heart-lung transplant.

“They told us from the get go that if he goes into some kind of concerning arrhythmia, with Restrictive Cardiomyopathy, they don’t normally come out of it.”

The prognosis for Restrictive Cardiomyopathy is 50% at two years after diagnosis, and children with this condition are immediately listed for a heart transplant (to preserve the lungs before too much damage is caused). There also is a higher risk for arrhythmias and cardiac deaths, because the heart can only sustain a high pressure before the heart can no longer contract normally.

On May 13, Bryson, now staying each day at the hospital, was given 1A priority status for a heart transplant. Ashly had to leave her job as working as a NICU nurse for Lee Health to be with Bryson in Gainesville, while Brandon, working full time to maintain their health insurance, made the 4-1/2 hour drive every other weekend.

“Bryson was everyone’s light in the hospital,” Ashly said. “He would ride his ‘train-bike’ through the halls yelling, ‘choo-choo!’ You’d never know anything was wrong.”

When Bryson would get his IVs or labs, he naturally would cry and his mother would console him. But when technicians would have to take more tests, he’d say, “OK, last time guys, last time.”

When music therapy came into the room and played a song Bryson wasn’t too fond of, he politely told the musician to stop. The musician then walked out of the room acting sad, and Bryson immediately said, “I sorry! I sorry! Come back!”

“He’s so selfless,” Ashly said. “He’s such a caring little kid.”

Bryson stayed in the hospital for seven months waiting for a transplant, until the family decided to wait at home. Ashly said her son was also finding it a bit difficult over time as COVID-19 protocols saw the playroom closed and he was refined to a hospital room for the majority of his time.

“Most interactions he had were medical,” Ashly said. “We then thought about his quality of life. Yes, he needs a transplant, but he can wait on the list at home.”

Bryson and Ashly returned home for what they thought would be a brief stint away from the hospital before going back, but Bryson was doing well and continued his time away from hospital walls.

After about six months, the Gardners decided it was time to go back to the hospital full time, but just weeks before they made the move, Bryson got his first heart offer — on Ashly’s birthday. Unfortunately, the transplant fell through as consent was revoked. Bryson and Ashly on Dec. 28 went to Shands full-time to once again wait. It was on Feb. 15, 2022, Bryson’s third birthday, when he received a second heart offer and underwent a successful transplant.

“It’s about three weeks out and he’s doing very well given everything that’s happened,” Ashly said, adding they hope to be able to return home in three months.

Ashly said that this past Tuesday, Bryson had an echocardiogram and EGK, and that things were looking good. She said the left ventricle looks to be functioning better, but that the left atrium is quite compressed because it is a much larger heart. “The team is not concerned about that though, they said he should grow into this new heart perfectly with time,” she said. “Also, one of the vessels where the new heart was sutured has some narrowing that they are going to stretch open at his next heart catheter in a month or two. Also not too concerning. All normal things to see post-transplant.”

Ashlyn said they expect Bryson’s new heart to be functional for around 20 years.

“We don’t have that overwhelming fear now that something is going to happen to our child, she said. “Yes, there are still risks, yes, he’s immunosuppressant, yes, he can get infections, but I feel that the risk of that versus the risk of him dying before transplant is so much better.

“This heart’s not going to last forever, we know that. The younger they’re transplanted, the sooner they’ll need a second transplant later on in life just because of puberty and the way puberty works on the heart. To me, 20 years is a whole long longer than I had with him pre-transplant. We don’t have to have him live in a bubble as much as we did before. He’ll still have to be cautious, but once he’s recovered fully, he can play sports and be more active.”

Ashlyn said the cardiac gene Bryson was positive for is carried in the muscle of the heart, so once the muscle was cut out, the chances are very slim for his body to do what it did to the last heart.

It was the transplant social worker at Shands that introduced the Gardners to COTA. COTA helps children and young adults who need a life-saving transplant by providing fundraising assistance and support.

“We didn’t think we needed help and didn’t want to ask,” Ashly said, adding their total medical expenses before insurance were estimated to be $1.2 million. “I thought we could pay the medical bills and insurance. I figured we could make it work. We’ve been paying medical bills since he was born. It became so overwhelming that with the bills and relocation fees and travel, we had no money for anything fun for him. At what point do we have to consider quality of life for him. We had to scrape up money for birthday parties. I didn’t want the transplant to rip everything from up underneath us and not be able to give him a life because we’re so focused on paying for all of these things. By having these donations, it has helped us so much.”

COTA is a 501(c)3 nonprofit organization; therefore, funds raised to help meet transplant-related expenses are not considered income for families.

“Our guidance and assistance are provided at no charge to transplant families, and 100% of money raised in honor of a COTA patient helps meet transplant-related expenses including transportation, lodging, household expenses, prescription medications, insurance premiums, living donor costs and much more,” said COTA Director of Communications Kim Parker. “All of us at COTA are thrilled to welcome Bryson and his family to The COTA Family. Our commitment is to provide support and guidance to the family to help with a lifetime of transplant-related expenses.”

Ashly said COTA has been amazing to work with and has been extremely supportive since they reached out. Monetary donations to COTA for Bryson and kept in an account, used to reimburse the family who provide proof of expense. COTA even provides grants to families for medical expenses.

Cape Coral volunteers are raising $60,000 for COTA to assist with transplant-related expenses. Bryson’s team is trained by COTA and given a platform to create fundraising events both in person and online.

COTA for Bryson’s Heart T-shirts have been created, a garage sale fundraiser at Ranch Road Baptist Church in North Fort Myers is on March 25 and a fundraiser at Overtime Pizzeria & Sports Pub in Cape Coral (1708 Cape Coral Parkway W) takes place March 26. Donations are also tax write-off eligible. Volunteers are needed for this community campaign. Individuals and groups interested in more information should contact Community Coordinator Lindsey Gibbs at cotaforbrysonsheart@gmail.com or 239-222-2578. Contributions may be sent to the Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403. Checks should be made payable to COTA, with “In Honor of Bryson’s Heart” written on the memo line. For secure online donations, as well as updates on Bryson, visit www.COTAforBrysonsHeart.com.

-Connect with this reporter on Twitter: @haddad_cj

To reach CJ HADDAD , please email cjhaddad@breezenewspapers.com