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Taylor Kittle, a third grader at Celina Elementary School, is on the heart transplant list. She was born with a rare congenital heart defect.
A Mercer County family is asking for prayers and awareness for their 8-year-old daughter who was born with a rare, congenital heart defect.
Taylor Kittle, a third grader at Celina Elementary School, was born with hypoplastic right heart syndrome combined with transposition of the great arteries. In this heart defect, the right side of the heart is underdeveloped and the two main arteries leading out of the heart are swapped. After numerous surgeries and countless medications, she is at the top of the heart transplant list and is anxiously awaiting a new heart.
She has not left Nationwide Children's Hospital in Columbus since her admission in January.
Taylor is strong and sassy, according to her family. Her father, Tyler Kittle, and grandmother, Angela Kittle, live in Mendon. Her mother, Ashley Toler, stepfather, Michael Toler, and four half-brothers live in Celina.
"She's still a strong-spirited little girl and has been able to get up and walk around," Angela Kittle said. "I'm going to say she's been in the hospital (for) a third of her life."
The defect, which researchers estimate that less than 50,000 people in the United States have, causes a low level of oxygen in the person's blood, according to the Cleveland Clinic. HRHS' symptoms include bluish hands and feet, shortness of breath, rapid breathing, general malaise and fatigue. The cause is unknown, but researchers believe genetics may be involved.
When she was 8 days old, Taylor underwent her first open-heart surgery, where she flatlined twice, Angela said.
The surgery, called a Blalock-Taussig-Thomas shunt, establishes blood flow to the lungs, according to the clinic. Surgeons use synthetic fabric to link the subclavian artery to the pulmonary artery.
At 6 months old, she underwent the Glenn procedure and then the Fontan procedure when she was 2 years old, Toler said.
Each operation creates a new route for blood to flow around the right ventricle, or the lower heart chamber, that isn't working properly, per the clinic. A fully developed right ventricle can pump blood to the pulmonary artery. The procedure allows blood to flow from a major vein to the pulmonary artery and from there, blood flows to the lungs, where it can get oxygen.
After Christmas, doctors admitted Taylor to the hospital because her kidneys and liver were failing due to lack of oxygen.
On Jan. 16, she underwent a five-hour surgery to fix her leaky mitral valve, which ultimately didn't resolve the issue.
She was put on the transplant list Feb. 13, being listed as 1A status, which is the highest, most urgent priority level on the pediatric heart transplant waiting list, per Toler. Taylor is in a tricky position where she is too old for a child's heart and too young for an adult heart, Angela said, recounting what the surgeons told her.
"She can be sassy," Toler said of her daughter. "She has her days at the hospital. I mean, she just keeps saying she wants to come home, but I keep telling her, 'You know, I got to make sure you're 100% safe to come home.' She has her days where she's in a good mood and there's other days she (doesn't) want anyone touching her, but usually she's a pretty happy going child other than the medical (issues). I don't blame her - being in there since Jan. 5 is a long time."
On Aug. 20, Taylor underwent a surgery that put her on a mechanical heart pump.
Angela said Taylor has been declining the past two months.
On Aug. 20, Taylor again underwent a five-hour surgery to put her on a mechanical heart pump, the Berlin Heart Ventricular Assist Device, until she receives a new heart.
"They have to have special cardiologists pushing this machine around with her, which the machine is on the outside of her stomach, and you can actually see … when her heart is not beating the correct way, the machine starts up and starts pumping her heart so she's getting enough oxygen to her organs," Angela said of the VAD. "Three hours after surgery, her heart rate already came down, her blood pressure was good (and her) oxygen was good. This machine is kind of experimental, so they can't say how long it will last."
Despite the heart complications, Taylor's parents say their daughter is just like any other 8-year-old.
Taylor loves Elsa from Frozen, Paw Patrol and JJ from Cocomelon, Toler said.
Tyler added that Taylor loves fishing, going on walks, country music, golf cart rides, the Seattle Seahawks, gardening and playing the PlayStation with her dad.
Taylor loves the Michigan Wolverines, the Seattle Seahawks and NASCAR.
"Since she was 4 or 5 years old, she loved going to Eldora (Speedway)," he said. "Her favorite NASCAR driver is Kyle Larson. She met him four or five times. She loves her Michigan Wolverines. She's basically following her dad's footsteps."
Taylor's teachers and family visit her often to uplift her spirits.
Anyone wanting to send her a virtual card can do so at nationwidechildrens.org/greeting-card. Messages should be addressed to Taylor Kiefer, her legal name, and her unit, which is H4B.
