Mending hearts and helping families

Christina Tonelli received text messages from people she'd never met as she waited out her daughter's surgeries. Some had heard of Sofia's plight through a friend, and wanted Tonelli to know her family was in their prayers.

Others — like Vanessa West — found some comfort in computer chat rooms, where mothers and fathers she'd never met gave her courage by sharing their own struggles.

West's story started unfolding more than two years ago when she learned the 17-week-old girl she was carrying had a malformed heart.

After her daughter's birth, West learned that Arianna, now 18 months old, has multiple heart defects due to a congenital condition called DiGeorge syndrome.

West, 23, longed for more interaction with local families, people she could meet and befriend.

"I started looking for support, but there was nothing for families like us," she said.

In January, she learned about a national organization called Mended Little Hearts and set out to start a chapter here.

She began contacting Tucson hospitals and pediatricians, urging them to tell families about the new group. Many have responded, she said.

"Now instead of sending people out the door with nothing, they can give them a brochure and give them a phone number," West said.

Mended Little Hearts of Tucson now meets at 6 p.m. on the first Tuesday of each month at University Medical Center, 1501 N. Campbell Ave., in dining room E.

Meetings will often include a speaker. At their first meeting two months ago, for example, a 35-year-old woman who survived a heart defect spoke about her life.

Claire Wells, a pediatric nurse practitioner at UMC, said Tucson has needed Mended Little Hearts for a long time.

Wells, 35, said while the medical community provides support, it's not the same as talking to other parents.

"I've never had a child with a heart defect so, while I can empathize, I can't entirely be there for them in those aspects," she said.

In addition to the monthly meeting, West hopes to eventually do fundraising and have family outings. The group has also started providing care bags for families of hospitalized children with heart defects.

West hopes the bags help people feel less isolated and frightened.

"It really touches you when you're going through something like this to know, 'Hey, somebody cares,' " she said.

Tonelli, 40, plans to become more involved with Mended Little Hearts once her 14-month-old daughter, Sofia Tonelli-Pepe, becomes more stable and can eat without a feeding tube.

"Hopefully, within the next year, we can start getting some rest, and then we'd love to help more," she said.

Tonelli was 20 weeks pregnant when she learned Sofia had a hole in her heart and was also missing a valve. After her birth, Sofia was home just two days before she had to be rushed back in for surgery.

"I was terrified. This is my first baby, and I don't know the signs to look for in a regular baby, let alone one going into heart failure," she said.

In the months ahead, Sofia's heart failed again and again. She underwent several complicated surgeries.

Tonelli said since Sofia has Down syndrome, she easily found connections through a local Down syndrome support group.

But Tonelli said she also longed to interact just with parents of babies with heart defects.

"You don't even think much about Down syndrome after you hear about a heart defect," she said.

The new support group also offers a lot for Jason Langlois, whose daughter, Aurora, was born with only half of her heart because of a medical condition called hypoplastic left heart syndrome.

Langlois' stress through the surgeries and hospital stays has been compounded by the fact he's raising his daughter alone.

"Ever since she was born, there's not been any support here in town," he said. "When I got ahold of Vanessa and found out she was starting this group, I was all over it."

He said babies with heart defects have fragile immune systems and can't go out in public very much, which makes isolation one of the most difficult issues to deal with.

"Life is different than anything you can imagine," he said. "Nobody but other parents who have been though it have any idea what we go through."

For the last few years, Langlois hasn't been able to work and now lives with his parents. In the meantime, he's earned a bachelor's degree in organizational management and started looking for a job two months ago after doctors cleared Aurora, nearly 4, for preschool.

"Aurora has been doing just phenomenally well. Honestly, unless you know there's a problem, there's no way to tell," said Langlois, 31.

In time, however, Aurora will need a heart transplant.

Langlois said when people remark on his resilience, to be caring for his daughter without a partner, he tells them there was never any choice to be made.

"To me, it's like, 'What else would you do?' " he said. "She's my little girl."

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For MORE INFO

For more information on the Tucson chapter of Mended Little Hearts, call Vanessa West at 406-5655 or e-mail her at tucsonaz@mendedlittlehearts.org.

For more information on Mended Little Hearts nationwide, visit www.mendedhearts.org.