Bettendorf girl will share her tale of the heart on NPR

Originally Posted Online: Nov. 30, 2010, 6:06 pm
Last Updated: Nov. 30, 2010, 11:46 pm
Comment on this story | Print this story | Email this story
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.


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.



Local events heading

  Today is Sunday, Sept. 21, the 264th day of 2014. There are 101 days left in the year.

1864 -- 150 years ago: We hear that Col. Reynolds has employed C.D. Merrill to drill for water to supply the Rock Island Barracks.
1889 -- 125 years ago: Billy Catton, famous billard player, returned to Rock Island with a view to making this city his home in the future.
1914 -- 100 years ago: The belief is growing that a great decisive battle of the World War was being fought at Verdun, a strong fortress of France on the Meuse near the French frontier, according to a London dispatch.
1939 -- 75 years ago: William Stremmel, 91, Rock Island's last Civil War veteran, died.
1964 -- 50 years ago: Workmen of the Midwest Wrecking Co., Clinton, have begun razing the historic old office building of Deere & Co., 1325 3rd Ave., Moline. The site will be used by the Deere Plow Works for its shipping and receiving department.
1989 -- 25 years ago: East Moline developer Jim Massa says the financial package for the proposed $34.5 million Quad City International Motor Speedway is down to making sure "all the i's are dotted and t's are crossed. Finalizing this will give the green light to see if NASCAR and CART, the auto racing sanctioning bodies, approve race dates.

(More History)