Run for Reece to help local family with medical bills

Reece Bova was not quite a year old when his parents were told he won’t live to see his fifth birthday, that his heart will fail and there was nothing else to be done.

Refusing to accept that prognosis, Matt and Shannon Bova of South Toledo set out to find a doctor who would treat their son.

“We were told there was no one — no doctor, no hospital — who could help us, that the procedures he would need were too dangerous, that the risk far outweighed the reward,” said Shannon, 31, a Bowsher High School graduate and former Toledo Free Press employee. “We as his parents obviously were not happy with that response.”

The Bovas, who lived in Tennessee when Reece was born, sent his records to pediatric heart centers nationwide and were turned down by all but one.

They now travel to Boston Children’s Hospital a few times a year so Reece, now 2, can undergo a procedure that uses balloon catheters to temporarily widen the too-small arteries in his lungs, so his heart doesn’t have to work so hard pumping blood to his lungs.

“Because the arteries are so small, they can only dilate them so much,” Shannon said. “And once the arteries are opened a bit, they can begin closing again.

“The reason why they said it’s so risky and dangerous is because the arteries are so small that they are at risk of rupturing if they dilate them too much. If they do that, then he starts bleeding into his lungs and you may not always be able to stop the bleeding in the lungs. Obviously if your lungs fill with blood and they can’t stop it, then that’s it.”

The Bovas moved back to Toledo about a year after Reece was born to be closer to family.

Reece will likely need the artery-widening procedure for the rest of his life, but doctors are hopeful the frequency can be reduced.

“The analogy they gave us was if you take a balloon out of a package, it’s really stiff. The more you blow that balloon up and let the air out, it’s going to be stretched a little bit, and hopefully it will stay open longer,” Shannon said.

“The hope is we can do these every six months for a couple of years and then he may not need them as often, maybe once a year, maybe once every two years. We’re not there yet, so we don’t know, but we do know his body responds well to the treatment.”

The diagnosis

Reece was born with a congenital heart condition called Tetralogy of Fallot with severe peripheral pulmonary artery stenosis. He is not a candidate for a heart transplant because of his lungs and isn’t eligible for a lung transplant because of his heart. He was also born with only one kidney.

Shannon had no indication during her pregnancy that anything was wrong. But when Reece was born in March 2012, he was “silent, limp and blue,” she said.

“It was probably three minutes that passed and we finally heard him cry,” she said. “They initially thought the birth had maybe just stunned him a little bit and he would spend the night in the NICU and be fine. But he didn’t improve. That’s when they brought in the pediatric cardiologist.

“He was born at 9:23 at night and I would say by midnight we were in a tiny little conference room with the cardiologist, bawling our eyes out,” Shannon said. “We went to the hospital that day thinking we were going to experience happiness and everyone taking pictures; instead we experienced something much different. We experienced fear, the unknown.”

The new parents were told Reece had Tetralogy of Fallot, a series of four anatomical abnormalities of the heart.

“I was kind of numb at first,” said Matt, 30, a native of Dublin, Ohio. “It didn’t really sink in. I didn’t know what to think or what was going to happen down the road. Just the unknown was kind of scaring me at that point. All we knew was we had to take it day by day.”

The day after Reece was born, he was transferred to a children’s hospital in Atlanta where he spent 17 days in the NICU. He had a shunt placed in his heart at 6 months old and open heart surgery in December 2012 before his first birthday.

Doctors were puzzled when Reece didn’t show the improvements they expected after his open heart surgery and the Bovas were soon presented with more bad news.

“Typically kids with Tetralogy have their repair and grow up to lead fairly normal lives,” Shannon said. “Shaun White the snowboarder has tetralogy. There’s a couple of NFL football players. Things would be much different right now if it was only the heart.”

In February 2013 doctors discovered Reece also had severe peripheral pulmonary artery stenosis, a condition in which the arteries in his lungs are too small, putting pressure on the heart as it works hard to pump blood through the lungs.

“That was the day they told us that he would not survive to see his fifth birthday,” Shannon said.

Run for Reece

To help the family with medical costs, Shannon’s mother, Kathy Phillips, and sister, Jenna Phillips, 18, both of Maumee, have organized a nighttime 5K and one-mile fun walk fundraiser.

Run for Reece will take place at 7:30 p.m. Oct. 4 at Woodlands Park in Perrysburg, followed by a glow-in-the-dark afterparty. Cost is $25 in advance or $30 at the race. The race will not be timed and family-friendly events are planned. The organizers are also looking for corporate sponsors.

Money raised will go toward paying off existing medical bills and future trips to Boston Children’s Hospital. Reece’s next treatment will be in November or December, Shannon said.

“As a family, we just wanted to help,” Kathy said. “It’s very hard. You feel very helpless. You just try to be there for support because that’s all you really can do.”

“He’s my beautiful little nephew. I wouldn’t trade him for the world,” said Jenna, a recent Maumee High School graduate now studying nursing at Mercy College. “It’s just hard as family to sit back and listen to all the money worries and everything. We just wanted to help.”

Another way to help is to bring the flier found at the Facebook page “Run for Reece” to the Applebee’s at 531 W. Dussel Drive in Maumee on Sept. 17 to have 15 percent of your bill donated to Run for Reece. Participants will also get a $5 coupon for their next visit.

Progress

Because of his heart and lung conditions, Reece also has numerous developmental delays. He started crawling around 18 months and only recently started walking. He doesn’t talk yet and is still bottle-fed — apparently scared to eat after so many intubations during hospital stays, Shannon said.

He sees a physical therapist to work on his gross motor skills, an occupational therapist to help him learn to eat and a speech therapist to help him talk.

Frustratingly, one step forward medically often results in two steps back developmentally, Shannon said.

“From spending time in the hospital, you saw his muscles weaken a little bit so his mobility is not as good or just when we saw him start opening his mouth for a spoon, he went to the hospital and was intubated and came back wanting nothing to do with it,” Shannon said.

Matt and Shannon said they sometimes find it difficult to see other kids Reece’s age reach milestones he still struggles to attain, but then they remind themselves of everything he’s gone through and how far he’s come.

“[I feel] anger, jealousy, sadness, knowing that we are so far behind that,” Shannon said. “But then in the same breath, I think, ‘Well, you know what? Those kids have not had open heart surgery and have not been given the prognosis he was given.’”

“I just want to see him be a typical kid, just doing regular things like playing sports, playing in the grass, talking, eating food — all the things a lot of parents take for granted because their kids just start doing it on their own,” Matt said. “Just those little things are big for us.”

In other ways, Reece is like any other toddler. He loves watching cartoons, jumping on trampolines and “getting into things,” like any new walker, Shannon said.

“He’s made a significant amount of progress, but I would be lying if I said there wasn’t still a lot of fear of the future. Because while we know he responds well to the treatment, at any time something could change,” Shannon said. “At any time his heart could decide that it’s been working too hard and it doesn’t want to anymore. We’re trying to make that not happen by making these trips to Boston and continuing to be his biggest advocate.”

For more information or to register visit www.runforreece.com.