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Mended Little Hearts: Local chapter offers support to parents of children with defects

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Megan Setzer, of Winchester, holds her son, Caleb, recently. Caleb was born with a serious heart anomaly and has already had two open-heart surgeries. Facing a third one when her son turns 3, Setzer helped begin a local chapter of the national support group Mended Little Hearts for parents of children with heart defects. Courtesy photos

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Caleb, 8 months old, has a scar on his chest after two surgeries to repair his heart.

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Caleb, born with hypoplastic left-heart syndrome, will eventually need a heart transplant.

Mended Little Hearts of Winchester

Starting in January, Mended Little Hearts of Winchester will meet at 7 p.m. on the second Tuesday of the month in the systems support building at Winchester Medical Center. For more information, visit www.mendedhearts.org/mlh/frame-mlh.htm.

By Sally Voth - svoth@nvdaily.com

WINCHESTER - Parents and parents-to-be of children with cardiac defects can take heart in a new support group in Winchester.

Mother-of-two Megan Setzer has helped found Mended Little Hearts of Winchester, which had its first meeting a month ago.

She was 18 weeks' pregnant when she found out her baby had a serious heart anomaly. An ultrasound at 17 weeks showed something "a little funny," and Setzer was referred to a high-risk obstetrician. From there, she was sent to the University of Virginia Medical Center.

Her fetus had hypoplastic left-heart syndrome. In-utero surgery was initially recommended, but it turned out his little heart was already too damaged for that. Setzer and her husband, Carl, were told their baby likely would die in the womb.

"It's scary receiving that diagnosis," Setzer said.

Thankfully, her baby, Caleb, made it to birth, and is now nearly 8 months old. He has had two open-heart surgeries, and will have a third at age 3.

While awaiting Caleb's arrival, Setzer wanted to connect with other families of children with heart problems.

"I was trying to find a support network that would help, just someone that could relate to what I was experiencing, another family," Setzer said. "I wanted something. There was nothing in this area."

She went on Facebook, and her doctor put her in touch with an area family whose little boy had the same congenital defect. She was inspired by the active, happy 2-year-old.

"That gave me hope to see this little boy have such quality of life and just run around," Setzer said.

In hypoplastic left heart syndrome, the left side of the heart is totally malformed and too small to supply blood to the body, Caleb's pediatrician, Dr. John Volinksy, of Winchester Pediatric Clinic, said. In the past, hospitals would just do transplants for such patients, but now a three-stage repair is usually done to get the heart to supply enough oxygen to the body, he said.

"I have kids now towards the end of elementary-school age who are really doing pretty well with it," Volinksy said.

Setzer and Sarah Northcraft, whose child Aron had the same defect as Caleb, decided to start an area branch of Mended Little Hearts, a national organization that provides support to parents of children with congenital heart defects.

"Our first meeting was Nov. 10, and we had nine families show up," Setzer said. "Some of them were there like 20 minutes before our meeting. It just helps to connect with other families that are going through the same thing, that can understand your sometimes everyday stresses. The only person that can really understand is another parent that has been in your shoes.

"There's someone out there if they need it that can understand what they're going through and provide them with some hope and support. We really hope that we can get the word out to other families so they don't feel alone like we did, and get the kids together, too."
Mended Little Hearts of Winchester is starting to put care packages together for parents and children who might have a long hospital stay.

Tragically, Northcraft lost her son, Aron, last month. The family requested memorials go to Mended Little Hearts of Winchester.

Beth Niessner, of Winchester, and Stephens City resident Jenny Myers both joined the new group.

Niessner's 4-year-old son Nathan has double-outlet right ventricle defect, among other issues.

"We've been struggling as a family ever since we were diagnosed," she said. "The support is so few and far between. I don't know if it's just the kids are only just really starting to survive."

After Niessner's baby was diagnosed in-utero, she found limited support at Johns Hopkins, where she'd gone for treatment.

"It wasn't what I needed," she said.

Niessner was looking for someone "who can empathize and commiserate with what you're going through." She was pleased with the first meeting in Winchester.

"We had all different ages of children in there and young adults who are cardiac survivors," Niessner said. "When we were together in that room, we knew that we were just connected right away. I know for my husband, too, it's nice for him to be able to connect with other dads who had walked in his shoes."

She said Nathan, who has had five open-heart surgeries, is "in a good spot right now."
"Basically, he's growing out of the heart that he has," Niessner said. "That would potentially put him on a transplant list."

Because Nathan goes for treatment in Baltimore, Niessner likes having a support group she can rely on back home.

"It's such a different lifestyle, to always be hanging in the balance with the heart scare," she said. "It's a very lonely road."

And, it helps Nathan to have peers he can relate to.

"Nathan being 4, it's very comforting to me to know that I can say to him, 'Oh yeah, they have a heart just like you,'" Niessner said. "He's much more comprehensive now. He knows that he has to go to a doctor for his heart."

Sam, the youngest of Myers' three sons has Down syndrome and atrioventricular canal defect and underwent surgery at UVA last week to repair the holes in his heart. It should be the only surgery Sam needs, and it went well.

"[The doctor] actually used the word 'perfect,'" Myers said.

She's found Mended Little Hearts a comfort.

"Even if you don't have to have surgery, it's good to know you're not alone," Myers said. "It gives [you] somebody to talk to who knows what you're going through. I'm excited about the care bags and sending them to families in the hospital. It's just a great organization. There's a lot more out there with defects than I think people realize."

That's true, Volinksy said.

"Congenital heart disease is not that uncommon," he said. "I think [Mended Little Hearts of Winchester] is great. I think a lot of families don't know about it yet because it's new. The people who have started this are just wonderful parents."

Volinsky would be happy to attend a meeting.

"If Megan asks me to do anything, I will do it," he said.

Volinksy pronounced Caleb "adorable" and "bright-eyed."

Aside from Caleb's scar, it's hard to tell he has a heart condition.

"If you were to look at him, you would never know that he has a serious heart defect," his mom said. "He looks really good. He's on the good end of the spectrum for his heart defect. He eventually will have to have a heart transplant, but their goal is to get him to
live as long as he can with his own heart."

That's because heart transplants can lead to serious complications, she said.
Still, Setzer knows she's fortunate her child was born when he was. The surgery he's had done has been around less than 30 years, she said.

"Before that, these babies would go home and die," Setzer said. "They would live a couple weeks and would suffocate."

Yet, there are still risks for Caleb.

"[Doctors] told me with any kid like this, sudden death is always a possibility," Setzer said. "We just kind of take everything day by day, and enjoy everything."


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