A Tale of a Little Heart . . .
By Jeanne Sager
NEVERSINK February 13, 2007 Bryce Rogerson is every bit your typical toddler he pulls up his shirt to show off his belly, and then you see it.
He’ll be two at the end of this month, but Bryce has scars on his chest and a feeding tube protruding from his tiny round belly.
He’ll celebrate his birthday, appropriately enough, in the same month that’s been set aside to bring awareness to congenital heart defects, the number one birth defect in America.
According to the March of Dimes, one out of every 100 babies is born with a heart defect.
Of that number, 8 percent have hypoplastic left heart syndrome (HLHS), the condition that sent Bryce into his first surgery when he was still inside mom Nicole.
His was supposed to be a normal pregnancy.
Nicole Rogerson has a daughter, 9-year-old Emily, who is a happy and healthy student at Tri-Valley Central School.
She’d just married husband Brian when they learned they were expecting their first child together; she calls Bryce her “honeymoon baby.”
She went for a regular sonogram at 18 weeks.
That’s when Dr. Lewis Broslovsky of Crystal Run called her with a strange request.
He wanted her to go back for another sonogram at 20 weeks.
“I remember looking at that ultrasound monitor and not seeing four chambers of the heart,” Nicole said.
Broslovsky called her on a Friday evening at home something wasn’t right.
He wanted her to see a pediatric cardiologist immediately.
But when Nicole called Columbia Presbyterian, she was told there were no available appointments for three weeks.
“I said, ‘I’m not waiting, and I went on the Internet,’” she recalled.
Meanwhile, she’d been to Westchester Medical Center for a fetal echocardiogram that confirmed her son had HLHS.
In children with HLHS, most of the structures on the left side of the heart are small and underdeveloped.
Bryce’s were “minute,” Nicole recalled, “not ever usable.”
Complicating matters was his atrial septum, the wall that separates the heart’s left and right sides.
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 some kids, it doesn’t partition they’re born with a “hole in the heart,” Nicole said.
In Bryce, it was never open.
Doctors told her he had a 20 percent chance of surviving at birth.
By now, Nicole was 23 weeks, 6 days pregnant.
You can’t terminate after 24 weeks,” she explained. “We had to decide in a day.”
They’d been told fetal intervention could double Bryce’s chance at life, and Nicole said it was an easy choice.
“We said, we’re going to do whatever we can experimental-wise,” she recalled. “We were fine until we had to call our parents.”
When they got home from the echocardiogram, Nicole went on the Internet.
She still had her appointment at Columbia Presbyterian on the schedule, and she had calls in to Children’s Hospital’s pediatric cardiac specialists.
A few days before Thanksgiving 2004, Nicole called the doctor in Boston again.
“He calls me on Sunday, explains he was out of town for the holiday and says, ‘Can you be here on Tuesday?’” she recalled.
The Rogersons arranged for someone to take care of Emily and packed their bags.
They arrived in Boston Tuesday only to learn the OB/GYN wouldn’t be available until Friday.
But that Friday, with Brian pacing the waiting room, Nicole was wheeled into an operating room at Children’s Hospital Boston in the third trimester of her pregnancy.
It was Dec. 3, and there was a team of doctors for her plus a team for Bryce.
Both of the Rogersons were paralyzed, and doctors cut a 2 mm hole in Bryce’s heart, inserting a balloon.
“His heart at that time was the size of a grape,” Nicole explained. “But as long as he was still hooked to me through the umbilical cord, he was fine.”
She was sent home from the hospital with plans to return in February to deliver Bryce.
On Feb. 23 at 37 weeks, 4 days, the doctors in Boston induced labor.
Bryce was born at 2:30 p.m.
“As soon as he started crying, he turned blue,” Nicole said.
He was rushed out of the room, and within 45 minutes underwent a cardiac catheterization. Doctors fed a small, thin, flexible tube up through his groin to the inside of the heart.
His parents finally got to hold their little boy at 9 p.m. that night, but the worst was far from over.
At 10 days old, Bryce underwent his first open heart surgery what Boston’s doctors call the Norwood, a procedure that connects the heart’s right ventricle to the aorta so that its flow will be delivered to the body through branches of the aorta.
A small aorta in Bryce’s heart was rebuilt and connected to the ventricle to allow for better blood flow to his lungs.
“Our cardiologist said it doesn’t get any worse than that,” Nicole recalled.
Because they had to wait for fluid to pass from his body before closing him up, Nicole said her first glimpse of her son after surgery was of his chest open, his tiny heart pumping.
She and Brian literally prayed for their son to urinate.
Bryce spent four and a half weeks in the neonatal intensive care unit, then another three in the cardiac unit at Children's.
He was sent home at seven weeks, weighing just one pound more than his 7-pound birth weight.
Before leaving the hospital, the Rogersons opted to have a feeding tube inserted in Bryce’s stomach to help him eat a reflux problem made it impossible for him to drink from a bottle.
To this day, he still gets most of his nutrition through the tube in the form of Pediasure drinks. Although he was eating from a spoon like most babies by six months, he had to undergo a second open heart surgery at eight months a procedure called the bi-directional Glenn which set him back.
The Glenn involved installing a shunt in Bryce’s heart, directly connecting the heart’s superior vena cava to the pulmonary artery.
It allows more of the oxygenated blood to flow directly into his lungs.
“They replumbed the whole heart in a three-stage surgery,” Nicole explained.
Bryce has received early intervention services since coming home from the hospital, including physical therapy.
Because he still cannot get enough oxygen, his lips and fingers are still tinted slightly blue and he has trouble with small muscle control.
He was on paralytic drugs for four weeks of his life, Nicole said, so it’s natural that he would be behind.
But the last time he was evaluated was before Christmas when he was about 22 months old.
On certain milestones, he was on target. On others, he was at a 14 month old’s development level, just 6 months behind.
He’s small for his age Nicole said his body can handle only one thing at a time.
“He can’t cut teeth and gain weight at the same time,” she explained.
The Rogersons travel to Westchester every two months for checkups.
The Neversink Ambulance Corps has a complete package of information on Bryce just in case and the family has emergency equipment in the house, including oxygen bottles.
Brian and Nicole, both corrections officers, are CPR trained.
Fortunately, they’ve never had an at-home emergency.
There are daily challenges.
Nicole was only able to return to work last March after more than a year off. Brian spent the first seven weeks of his son’s life at the hospital, then returned to the job.
There are mounting bills, but there have been some local fund-raisers for which the Rogersons are grateful.
Nicole said her regrets are few.
“This is his first baby, my second,” she said of Brian. “As a dad, he missed out on a lot bottle feedings, holding him… the first time we held our baby he was a week and a half old, and that was with wires hanging off of him.”
Being in Boston with Emily in New York was tough, but Nicole came home three weeks after delivering to pick her up from school for some quality time.
They weren’t home for an hour before Emily was begging to make the trip to Boston to meet her baby brother.
The family’s life has changed entirely, and they’re aware that another surgery is on the horizon.
The final open heart procedure is done before HLHS babies turn 3, sometime in the next year for Bryce.
Nicole spends a lot of time on the Internet these days, learning about the future for her son.
He’ll have to have another cardiac catheterization after his final surgery, and there is always the possibility of a pacemaker, a heart or lung transplant.
There’s an equal possibility Bryce will be fine, but Nicole wants to know everything she has to know.
“Even if you don’t have a sick child, be an advocate for your kid,” she said. “Ask your doctor so many questions whether you think they’re stupid or not.”
That includes not just pediatricians but OB/GYN’s, Nicole said, pointing to the rather dubious honor congenital heart defects have among birth defects.
“Everyone says, ‘how do you do it?’” Nicole noted. “You just do what you have to do for your kids.”