Jeanne Sager | Democrat BRYCE ROGERSON OF Neversink, nearing his third birthday, has defied the odds for infants with congenital heart defects.

Making sure that people are aware of congenital heart defects

By Jeanne Sager
NEVERSINK — February 8, 2008 — There’s a startling statistic floating around medical circles.
Thanks to one Neversink mom, it’s one the entire state will take notice of this month.
Next Thursday, Feb. 14, has been designated by the New York State Assembly as Congenital Heart Defect Awareness Day.
It’s a move to ensure parents-to-be know congenital heart defects (CHD) are the number one birth defect in American children.
The Childrens Heart Foundation puts the number at one in 100 births – about 40,000 children a year.
Of that, 20 percent don’t make it past their first year of life.
Bryce Rogerson is defying the odds.
Less than three weeks away from his 3rd birthday, the Neversink toddler shows few signs that he was born with hypoplastic left heart syndrome (HLHS).
His first surgery was inside mother Nicole’s womb, 26 weeks into her pregnancy.
Doctors inserted a balloon into the underdeveloped left side of his heart – HLHS is caused by a lack of development of the left portion of the heart during the first eight weeks of pregnancy, including the crucial left ventricle which is responsible for pumping out oxygen-rich blood to the rest of the body.
Alone the condition occurs in just 8 percent of newborns, but Bryce also has an intact atrial septum.
In a fetus developing normally, the septum begins as a hollow tube, then partitions develop within the tube that eventually become the septa (or walls) dividing the right side of the heart from the left.
In Bryce, it was never open.
He was given a 20 percent chance of survival when ultrasounds revealed the abnormalities in his heart.
Today, after fetal intervention and two open heart surgeries, Bryce is the Rogersons’ miracle baby.
He runs after big sister Emily and creates towers of Mega Bloks to show off to his parents.
He pieces together Mickey Mouse puzzles on the floor of the family room, and motors his toy firetrucks across the rug.
In short he’s a typical toddler.
But when he climbs on Mommy’s lap with a toy stethoscope, Bryce puts the listening device to her chest.
“Mommy’s heart,” he says with a serious look on his little face.
He hasn’t yet hit his third birthday, but Bryce Rogerson knows about the heart.
It’s not something Nicole or Brian Rogerson could have prevented.
They’ve taken the genetic tests, and there’s nothing in their family histories. Emily is a healthy child.
Instead, the Rogersons have looked to research, to education about CHD.
Nicole lobbied Assemblywoman Aileen Gunther to have the Assembly pass its resolution making Valentine’s Day not just a holiday about love but the hearts of every little boy and girl in New York State.
The resolution passed last March bears her name.
It’s a step in the right direction, but Nicole points to the lack of funding for CHD research.
According to the Children’s Heart Foundation, “The American Heart Association directs only 30 cents of every dollar donated toward research. The remainder goes toward administration, education and fund-raising efforts. Of the 30 cents that goes toward research, only one penny goes toward pediatric cardiology for CHD.”
The Rogersons have taken it upon themselves to try to increase the numbers.
With Bryce in the hospital for 10 days in January, their plans to hold a big raffle went awry.
But they’ve purchased a Magellan GPS and secured donations of a free weekend at the Hickory Lane Farmhouse in Damascus, Pa., $100 in Lotto scratch-offs and a $50 savings bond from the First National Bank of Jeffersonville.
The tickets are on sale at Cannie D’s in Neversink or folks can give Nicole a call at 985-7266.
At $5 apiece, the raffle will benefit the Children’s Heart Foundation.
“It’s the whole pay it forward type of thing,” Nicole explained. “They’ve all done for us… there’s no way to repay these doctors, these surgeons for your kid’s life.
“How do you repay them? You donate money for their research,” she continued.
Brian asked one of the doctors if he was amazed by what he can do.
“He turned to Brian and said, ‘Your son amazes me,’” Nicole said. “Obviously, we know he’s a miracle – he’s not a typical hypo-plas baby.
“Sometimes, we watch, and it’s like he’s a regular kid to us,” she continued, watching Bryce as he curled up to watch a DVD about firetrucks. “But you don’t forget, it’s always in the subconscious in the back of your mind.”
The Rogersons know Bryce will need another open heart surgery sometime in the next year or so – his progress impressed the doctors enough to put off one they expected to do before he turned 3.
They get themselves through by focusing on the positives, focusing on Bryce.
“Everyone handles things differently, but shame on the parent who sits there and says ‘Poor me,’” Nicole said. “Not poor you – poor baby.
“It’s not about you anymore, it’s about them,” she continued. “When you come so close to losing a kid, you have a totally different look on kids.”
Nicole hopes to become more involved in CHD awareness as Bryce grows.
She’d like to have a regular fund-raiser up and running, but the Rogersons have a second bit of good news – they’re expecting another child in 2008.
If Nicole can find others with a focus on CHD, she’d like to partner with them to keep plugging their cause.
Until then, she’ll hold on to the resolution from the state and celebrate another precious Valentine’s Day with her son.