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Bettendorf girl will share her tale of the heart on NPR


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Originally Posted Online: Nov. 30, 2010, 6:06 pm
Last Updated: Nov. 30, 2010, 11:46 pm
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By Laura Anderson, landerson@qconline.com

Hannah Wells ran to the door of her Bettendorf home, her long, wavy hair blowing behind her.

"Look at our Christmas tree!" she said wide-eyed, tugging at her striped dress.

You never would guess that in her 4 years, Hannah has had three heart surgeries -- one while in utero. And she will face a few more as she grows up.

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The in-utero procedure was the 42nd or 43rd of its kind to be completed at Children's Hospital Boston, her parents, John and Kim Wells, said.

Mr. Wells said National Public Radio will interview the family today and include Hannah's story in a health segment about cardiac fetal intervention with Hypoplastic Left Heart Syndrome (HLHS) during a Morning Edition scheduled to air Dec. 13.

According to the Children's Hospital Boston website, www.childrenshospital.org, HLHS is a syndrome that involves a number of abnormalities in the heart, including most of the structures on the left side being small and underdeveloped. Because of Hannah's successful surgery in utero,she was able to avoid HLHS.

Ms. Wells said Hannah's story began at the 22-week ultrasound when technician Char McGovern found spots on the baby's heart. They met with Davenport pediatric cardiologist Vickie Pyevich, who diagnosed Hannah with critical aortic stenosis, where the structures in the left side of her heart weren't correctly developing and operating.

"It was the worst day of our life," Ms. Wells said.

The problem usually leads to HLHS, andusually is fatal, the couple said.

Dr. Pyevich told them their options included pregnancy termination, a series of three surgeries if the baby lived full-term, or a risky, experimental procedure involving fetal intervention being done at hospitals in Cincinnati and Boston.

The couple saw the risky procedure as their only option, and the next day were on a plane to Children's Hospital Boston, which is affiliated with Harvard Medical School.

Madison, 9, said she knew she was going to get a sibling, but remembers asking her parents why they had to go all the way to Boston. "Why can't you just go to another hospital that's closer and get a baby?" she said. Her parents laughed.

Ms. Wells said the procedure was like an angioplasty. Doctors went in through her uterine wall and opened Hannah's aortic valve, though her heart was only about the size of a grape.

The procedure went well, but then it was a waiting game, because a lot of women miscarry after the procedure, she said. "But she did great."

Ms. Wells then had weekly checkups until it was time to deliver, and the family flew back to Boston.

The day after she was born, Hannah had another balloon surgery and spent just over 20 days in the critical intensive care unit in Boston."It was pretty intense," Mr. Wells said.

While she'll still have to take daily medication and have a few more surgeries, Ms. Wells said "it's nothing in comparison" to HLHS.

"We're really grateful," Mr. Wells said.

Hannah has had three procedures so far, one in utero, one the day after she as born, and open-heart surgery when she was 2 to repair part of a leaky valve.

Mr. Wells said she'll need the repair surgery again in another four to five years, again when she's 16 to 20 years old, and a valve replacement when her heart is adult sized, when she is about 25.

Ms. Wells said doctors don't like to replace valves in children because of the complications and medications, so they're hoping the replacement can wait until she's fully grown.

"The worst part was the day that we found out," Ms. Wells said."There's obviously still a chance that she might not make it down the road," but for now, there's a sense of it being OK.

The couple said the journey has been rough because they're self-employed - Mr. Wells travels to car shows around the country selling hot-rod paraphernalia -- and the cost of medical bills and insurance is steep.

They've established a trust for Hannah at helpinghannahsheart.org, and they're holding a fundraiser vintage car show called Torque Fest on April 29 and 30 in Maquoketa, with proceeds going to the trust.

The couple said they'd like to turn helpinghannahsheart.org into a non-profit to not only help Hannah, but to help other children and their families in need.

"That's our dream; that's our hope," Ms. Wells said.

Hannah tore through the room, a plush toy in one hand, wearing fairy wings on her back.

"And she's off!" Mr. Wells said.




 
















 



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