Ray Duckler: Boy in need of heart transplant a living legacy
Parker Bolton, 4, of Pittsfield, is battling a congenital heart defect, which has led to the passage of Parker's Law requiring New Hampshire hospitals to screen newborns for Critical Congenital Heart Disease. Recently, doctors have said Parker needs a heart transplant, giving him a life expectancy of about 10 more years.
(JOHN TULLY / Monitor Staff)
Photo couresty of the Boltons.
Photo couresty of the Boltons.
Sarah Saltmarsh, 10, Concord
“Nice to meet you,” Parker Bolton said to a stranger, a few feet inside the front door.
The 4-year-old Pittsfield boy then sat on the floor, where the Christmas tree once towered, pushing buttons and flicking switches so helicopter blades whirled, a fighter jet engine roared, and an 18-wheeler flashed its lights.
And that was just the beginning. Deeper in the Bolton household, where Casey and Keith insist their joy is real despite the heart transplant hanging over their son’s head, Parker set the trains in motion, played games on his iPad, made animal noises, hugged the stranger, hugged his mother, hugged his father, blinded you with his smile, played hide and seek . . .
So, that question you had going to the house, the one about how this young couple, married for five years, together for 12, could sound and act like – and genuinely be – one of the happiest couples you’ve ever met suddenly became clear.
“He’s happy and amazing,” says Casey, whose rapid-fire sentences never skip a beat. “You look at his face and how can you not be upbeat. Just to look at him and see all he has to endure and all he has to go through and how resilient he is.”
That’s resiliency, shown by the whole family, as in three open heart surgeries, first documented by the Monitor last February, because Parker was born without a left ventricle. That’s resiliency as in the laughter and smiles you see in the house, even after news that a hole left open after the third surgery could not be closed, meaning a heart transplant would be needed sooner than had been expected.
And, in the ultimate irony, Parker must wait, at least until next summer, because his quality of life right now is too darn good.
Once his health declines, the search for a donor will begin.
His life expectancy after surgery is 10 years.
“If you saw him you would not know he’s sick,” Casey said. “They’re amazed with how well he’s clinically doing. That’s why they don’t feel comfortable putting him through this. They said obviously the writing is on the wall, he will need a full heart transplant, but it could be six months, it could be a year, but they definitely know it’s in his near future.”
Casey and Keith, a couple with magazine-model good looks, are on opposite sides of the talk meter. Keith, a 1995 Concord High graduate, runs his own property maintenance company.
He smiles a lot but doesn’t say much. When he does talk, though, it’s worth a listen.
“If Parker were sad all the time, we’d be sad all the time, but he’s not,” Keith said. “He’s sad just during blood work and anything medically related. There are some months when he’s in there every other week.”
Meanwhile, Casey, a 31-year-old Pittsfield High graduate, has the perseverance of a hungry bear near a bee hive. The Legislature got a taste of her grit last year, when Casey helped pushed through what is now called Parker’s Law.
The statute makes it mandatory for hospitals to pre-screen for the seven most critical congenital heart defects before newborns can be released. Before the law came into effect in August, Casey said, 33 to 35 newborns were sent home prematurely, seven to eight needed further cardiac attention and one to two babies died at home, in their parents’ care.
The legal process, though, shook Casey’s faith in state government, as lawmakers balked at the idea of naming a law after a child still living, and resisted its passage because of fierce opposition to anything mandated.
Still others tried to hijack the bill by adding an anti-abortion amendment to it.
By the time Casey got the necessary votes, in June, the capitol building, in her mind, had turned into a House of Horrors.
“I never want to deal with politics again,” she said. “It was painful. We had hurdles every step of the way, and I didn’t realize that selling common sense was going to be so difficult.”
Now that it’s law, however, hospitals must do more, with equipment they already had available to them. And people are noticing, thankful that a little boy named Parker has, in his own way, added a safety checkpoint for babies.
The wife of a former classmate of Casey’s learned about Parker’s Law in birthing class and called Casey to thank her. So did Casey’s former high school volleyball coach, a registered nurse in Gorham who gathered information on Parker and relayed it to the hospital staff.
Just to personalize the name on the bill.
The little boy behind the name has a long fight ahead of him. He’ll undergo a transplant once his heart starts to fail. He’ll receive new medication and hope it doesn’t affect his kidney. He may never be strong enough to go to school.
But he’ll certainly know about a law with his name on it.
“I think it will make him more proud of his journey,” Casey said. “I don’t want him to feel sorry for himself. I want him to be proud of what he endured. I think it will make him a better person.”