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Mom of 'miracle baby' urges awareness of congenital heart defects

Journey Joy Baker started crawling at 11 months old and walking last week. She smiles often and has spoken her first few words. She's slightly behind a typically developing infant but Journey has had a lot more to overcome since she was born 14 months ago.

She has an undeveloped left side of her heart, making it much harder for Journey to pump blood with a force needed to get through her body.

"We call her a little miracle baby," said her mother, Talia. "She's had a really rough time but has exceeded expectations."

One in 110 babies is born with a congenital heart defect. They range from mild to severe. One in 5,000 is born with Hypoplastic Left Heart Syndrome, like Journey. She had open heart surgery at 5 days old to improve blood flow to her brain, and more surgery last June to reroute the blood supply to her lungs. She'll need a third operation before she is 3 to help blood flow more easily to the rest of her body. Most born with her condition a generation ago died in childhood, though medical breakthroughs since have helped some live into their 30s.

The Medaille and D'Youville College volleyball teams during their match this weekend will celebrate Journey and others with congenital heart defects. The Hearts on the Courts awareness event will run from 1 to 3:30 p.m. Sunday at Medaille, 18 Agassiz Circle, with help from the Western New York chapter of Mended Little Hearts Foundation. Talia Baker, 21, of Kenmore, who left nursing school at D'Youville to care for her daughter, is chapter co-leader.

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February is American Heart Month. The American Heart Association estimates that 2,300 Americans die each day from cardiovascular disease. The disease, including heart disease and stroke, remains the leading global cause of death with more than 17.9 million deaths each year. Learn more here.

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Q: What have the first two surgeries been like?

A: It was hard. My husband, Sean, and I had a hard time adjusting. He was here working and I was in Rochester at the hospital. ... It was super stressful.

Q: What does the future hold? A heart transplant? More surgeries?

Journey Joy Baker has had two heart surgeries since she was born 14 months ago and will need at least one more, says her mother, Talia.

A: There's no planning for the future because any point in time anything can go south. A transplant isn't always an option. There are a lot of factors, so if her heart starts giving out, it doesn't mean she'd automatically get a transplant. … My hope is that within 20 years they will have developed something that will help her to live longer.

Q: How is she developing so far?

A: She receives physical therapy, occupational therapy and speech therapy. She has more physical delays than developmental. Cognitively, she's really smart. There's not a lot known about the long-term impacts because it's been so rare for people to live longer. The research is happening now. She's in a research study with Strong Memorial Hospital (where her surgeries were performed). They'll see how she develops and what type of services she needs. … A lot of times, people with her defect do have delays, whether it be speech or physical. She's very small for her age. She's not in the first percentile for growth. She's very social. She loves going out and waves to everybody. She's very silly and goofy and sassy.

Q: Have you met other families whose children have the same congenital defect?

A: Another Mended Little Hearts leader has a son who's 14 with the same thing.

Q: How did you seek support when you knew what you were going to go through?

A: I didn’t contact anybody till after her first surgery because it was very overwhelming. I didn’t know or understand what was going on, or how to reach out to people. Moms started reaching out to me, and after that first surgery is when I started asking questions. One of Journey’s friends, from Elmira, has the same sort of defect only on the right side. They use the same hospital. We say that their hearts complete each other.

Q: How have your friends and family helped?

A: A lot of prayers and encouragement. A lot of people don't understand the severity of it. When a lot of people see her, they'll say, "She had her surgery, so she must be OK now. She's not sick." It's like putting a prosthesis on someone who lost a leg. ... She's also limited to seeing people, especially during flu season. We stay in the house mostly this time of year.

How did you find out about Mended Little Hearts?

A: They're connected into both Strong Memorial and Golisano Children's hospitals. All the people who run it have kids who have heart issues. Before I became a co-leader, I volunteered and sponsored a family up in the hospital for Christmas. I've made blankets for babies in the cardiac unit.

Q: How often does your chapter meet and what do you talk about?

A: We try to get together every three months or so. We have a Facebook page, facebook.com/MLHofWNY. We have a picnic every summer and events for families. People can call or email us using information on our Facebook page.

A lot of times, people will have to go the hospital unexpectedly and have long stays. That's common, so we provide emergency bags, called "Bravery Bags." We put in water bottles, snacks and toiletries for the parents, some kinds of activity books, blankets for the babies

Q: Has insurance been enough to cover your financial needs?

A: Thankfully, everything Journey needs is covered. The financial burden is having to be home with her. She can't go to a day care center and I can't really work. We thankfully live with my mother (Dawn Reigle). She's been a huge support. Unfortunately, there's not much to help families in our situation so we're trying to make ends meet. We're not the only family in this situation.

Q: What do you wish more people understood about congenital heart defects?

A: I wish people would be more aware that it's out there. More babies die from congenital heart defects than cancer every year. A lot of times, they're not caught early on, so prenatal care is important.

Contact the Buffalo chapter of Mended Hearts, a similar group for adults, here

email: refresh@buffnews.com

Twitter: @BNrefresh, @ScottBScanlon

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