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Little girl, big heart
Video
7-year-old in Struthers waits for a transplant
Tabitha gets out of breath and tires easily, and her lips and finger tips turn blue, as if she’s cold.
STRUTHERS — “Hi. My name is Tabitha and I need a new heart,” said the tiny girl, looking up through big blue eyes set in a smiling, elfin face.
It’s after school, and Tabitha is home with her parents, Michael and Lori Fiorenza; her younger sister, Hayley, 4; baby brother, Alex, 5 months; and her friend Julie Ritter, 8.
A 7-year-old first-grader at Struthers Elementary, Tabitha was born without the heart valve that regulates blood flow to her lungs. The condition is called double right ventricle outlet with pulmonary atresia, she informs — with very little prompting from her parents.
A double right ventricle outlet is a rare congenital heart defect in which both the pulmonary valve and the aorta arise from the same ventricle (double ventricle outlet) instead of from separate ventricles, according to the American Heart Association.
At just 4 days old, she had surgery at Rainbow Babies & Children’s Hospital in Cleveland to insert a shunt in place of the missing valve. At 2, there was more surgery, this time at Akron Children’s Hospital, to replace the shunt with part of one of her blood veins, said her parents.
Tabitha’s father, Michael, is a 1984 graduate of Poland High School. Her mother, Lori, graduated in 1990 from Chaney High School. Tabitha’s grandparents are John and Lois Porter of Austintown and Frances Fiorenza of Struthers.
Despite her weak heart, doctors have never restricted Tabitha’s activities, said her mother. But now she gets out of breath and tires easily, and her lips and finger tips turn blue, as if she’s cold. She is 43 inches tall and weighs 37 pounds.
On March 19, the family got a scare: Tabitha was having chest pains. Her parents rushed her to the Cleveland Clinic. She had fluid around her heart, which the doctors were able to deal with, said her aunt, Mary Ellks, Michael’s sister.
When the family got back home at 3 a.m. Thursday, Tabitha’s main concern was going to school that day because she didn’t want to miss the carnival. “I took her to the carnival,” Mary said.
At some point, she will need a new heart. “They have to put me on a machine and put me to sleep and take my heart out and put a new one in,” she said softly but distinctly, when asked if she understands.
Michael and Lori said they have always told Tabitha about her heart problem and what was happening to her. “I think it takes away some of the fear,” her mother said.
Tabitha, in fact, said she is anxious to get her new heart so she can run and play like other kids.
On one trip to the hospital for a routine checkup, she thought she was going to get a new heart — and was mad when it didn’t happen, her father said. “She had me crying,” Michael said.
But as brave as Tabitha is, she doesn’t like being alone in a hospital room. “I found out those chairs are hard to sleep on,” Michael said.
Living with the reality of Tabitha’s need for a heart transplant is not easy for her parents. “It is just something you learn to deal with, and we just go on with our lives,” her mother said.
Tabitha is on the “B” list at the Cleveland Clinic, which means that while her heart is weak, the condition is not immediately life threatening, her father said.
Part of dealing with the situation is being ready to move at a moment’s notice if Tabitha’s condition worsens and a heart becomes available for her. Their bags are packed, and Michael and Lori have cell phones so they can always be reached. Michael has made arrangements at his jobs to leave immediately. He works at Youngstown Thermal in Youngstown and Northwest Auto Sales in Struthers.
While she waits, Tabitha continues to be a typical 7-year-old, going to school and playing with friends.
“I want to be a teacher when I grow up,” and “I boss my sister around,” she said with a smile.
The Fiorenzas say they are fortunate that Tabitha’s medical bills are covered by his health insurance at work and the Ohio Department of Health’s Bureau for Children with Medical Handicaps. Still, there are expenses, such as transportation and lodging at the Ronald McDonald House, which are not covered by insurance.
Mary, and Michael’s other sister, Suzie Barris, both of Struthers, are organizing a benefit spaghetti dinner and basket raffle from 1 to 6 p.m. April 9 at the Roosevelt Park Community Center in Campbell to help defray expenses. Tickets are $10 per person, with children 10 and under free, and are available at the door. Companies wishing to donate can contact Mary at (330) 755-0246 or Frances at (330) 755-0135.
Tabitha wrote a letter to the community, with the help of her aunt Mary, telling about herself. Here is an excerpt:
“Hello, my name is Tabitha Fiorenza, but my friends and family call me Tabby. I am 7 years old and live in Struthers. Soon, I will get a new heart! I am happy that one day I will be able to run and play like the other kids.
“My mommy and daddy are saving up money to help with the costs for my new heart. But, we need your help too. ... We are having a spaghetti benefit dinner just for me. Spaghetti is my favorite food you know, and I can’t wait because I get to help at the benefit.”
Mary said she has received help from many sources, including friends at work and at Ink’n Thread Works at (330) 750-1011, which is also selling dinner tickets. She said the Lowellville High School Italian Club and two sororities at Youngstown State University have volunteered to work at the dinner.
“My inspiration for this event is not just the obvious — Tabby, but for my brother and his family, too. The Family Medical Leave Act allows families to take time off for a sick family member, but who pays the bills when you are off work? I just don’t want my brother to have to choose whether to go to work or be with his daughter during her surgery and recovery,” Mary said.
“I don’t want my brother and sister-in-law to worry about gas to and from Cleveland. I don’t want them to worry about how they will eat or pay bills. I want them to be able to fully concentrate on Tabitha. When parents worry, their kids are perceptive to that stress, and I just want Tabby to have the best chances to recover.”
Others are also helping, she said.
A worker from Lordstown General Motors is on a crusade to raise money at the plant; another family member is getting the word out at Mountaineer Race Track, and Struthers High School and Middle School pupils have raised money.
In addition, a benefit concert for Tabitha is scheduled for April 12 at The Riot, a youth center at Victory Christian Center, U.S. Route 422/McCartney Road, in Lowellville. Bands scheduled to perform include Eleventh Hour, Drew Anderson, The Shield and Never Say Forever.
Admission is $10, and the doors open at 4 p.m. There will also be a raffle for a new Fender guitar and amplifier donated by New York Music, 7144 Market St. in Boardman. Tickets can be purchased at New York Music (ask for John), 7144 Market St., (330) 758-4705; from Bigdog Productions at (330) 755-0023; at the church, or at the door.
Also, donations can be made at any National City Bank branch under the name of Tabitha Fiorenza.
“Tabitha lives life to the fullest. We should all take lessons,” Mary said.
alcorn@vindy.com