‘Heart Parents’ Facing Their Unusual Obstacles With Gratitude

Madeleine Rhoads is pictured at one month old after having her first open heart surgery at the Children’s National Medical Center in Washington, D.C. Submitted Photo

BERLIN – Jamie Rhoads was filled with excitement as she and her husband headed for the doctor’s office, eager to find out if they were expecting a girl or a boy. Though it was her first pregnancy, Rhoads felt great, content with the knowledge she was healthy and eager to find out more about the baby growing inside her.

What she was not expecting to find out was that her child, a girl, had a congenital heart defect. The baby’s aorta — the main artery in the human body — was coming out of the right ventricle of the heart when it should have been coming out of the left. Rhoads was told that if she opted to have the child, the baby would need surgery within days of being born.

Instead of thinking of names and picking out clothes, Rhoads was wondering if her little girl would even survive.

“You’re very scared when you find out something might be wrong with your unborn child,” she said. “The unknown was horrible.”

Years later, the memories of that difficult time haven’t faded. Madeleine Rhoads celebrated her fifth birthday this month, but her Congenital Heart Defect (CHD) is something she will be dealing with her entire life. And she’s not the only one.

“Congenital heart defects are the most common birth defect,” Rhoads said. “They affect one in 100 children. Twice as many children die each year from congenital heart defects as from childhood cancer. And it gets zero press.”
That’s something she hopes to see change. Rhoads, who lives in Berlin, has joined the local chapter of Mended Little Hearts, a non-profit aimed at helping families affected by congenital heart defects, to promote the cause and provide support for other parents in situations like hers.

Ocean City resident Nina Wheeler is also doing what she can to increase awareness. Wheeler was diagnosed with a congenital heart defect when she was born in 1964. After beating the odds and raising a family of her own, Wheeler is working on fundraising for those dealing with childhood heart problems. With OC Tri-Running, she’s hosting a Feet for the Little Beat 5K run Feb. 28 at Lighthouse Sound at 10 a.m. Registration begins at 8:30 a.m.

“I wanted to do something locally to make people aware,” Wheeler said.

She says she knows from her own experience how taxing it can be to live with a heart defect.

“It’s been my whole life trying to deal with illness,” she said. “It never ends for heart patients.”

 

Rallying Together

Rhoads says her chapter of Mended Little Hearts has three goals — to increase awareness, to raise money to support research into children’s heart issues and to provide support to parents whose children have been diagnosed with heart defects. Whether they find out prenatally or after the baby is born, it’s always devastating.

Understanding the diagnosis alone is a daunting task. Rhoads says that though the general term is CHD, each child’s situation is different. That’s something she learned firsthand when, like Madeleine, her second child was diagnosed with a heart defect in utero. That’s right — in spite of a healthy family history and assurances from physicians that she was no more likely to have a child with a heart defect the second time around, she did. Being familiar with the diagnosis didn’t make her feel any better about it.

Doctors determined that Rhoads’ second child, also a girl, had Hypoplastic Left Heart Syndrome — no left ventricle. Essentially she’d be born with half a heart.

“We felt like we pulled the short straw the first time,” Rhoads said. “To find out we were going to have a second CHD child, we were shocked.”

Further complicating matters was doctors’ discovery that part of the baby’s heart had closed and would need to be ballooned open as soon as she was born. After the initial heart procedure, Audrey went through the same heart surgeries — the Norwood, the Glen and the Fontan — as her older sister had. The first occurred when she was six days old. The second when she was six months old and the third just this year. Watching the girls play, Rhoads said you wouldn’t know they had both been through multiple open heart surgeries.

“You’d never know,” she said. “They run around and act like crazy kids.”

That doesn’t mean their worries are over.

“The left ventricle is the workhorse of the heart,” Rhoads said. “The right ventricle is not meant to pump for a lifetime.”

She says surgeries like the ones her daughters went through have only been being performed since the 1970s, so it’s hard to say how the procedures will affect the girls later in life.

“Lots of kids don’t even make it that far,” she said. “We’re desperate for research to prolong our girls’ lives.”

 

‘Heart Parents’

While some children with heart defects live perfectly normal lives, others struggle with everyday tasks. Though her children appear to be doing well, Rhoads is constantly on the lookout for red flags — a blue tinge to the lips and fingernail beds, dehydration or labored breathing. They’re signs that would be considered subtle by some but she’s confident she’ll notice them if they show up.

“We call ourselves heart parents,” she said. “We don’t live the typical life.”

That, she says, is why it’s been so helpful to connect with other parents dealing with CHD.

“When you first find out, you feel so isolated,” she said. “But when you meet other parents, talking about it is amazing support.”

In addition to providing emotional support, the local Mended Little Hearts group aims to help families financially as well. Rhoads says that though insurance covers many medical expenses, her family faces out of pocket costs of more than $12,000 a year. That doesn’t include the gas and hotel fees related to hospital visits.

“Getting a diagnosis like this affects a family in every way,” she said. “Emotionally. Financially. It’s a lot to take on.”

In spite of the challenges, Rhoads and her husband Brian are reminded daily they have something to be thankful for — their children.

“Even on the worst day when the kids are driving you crazy, we’re just grateful to have them,” she said.

February is American Heart Month. For more information on Mended Little Hearts, Rhoads can be reached at 301-508-0053.

 

 

 

 

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