Not your typical toddler: 2-year-old endures multiple organ transplants

Palm Coast Observer
Neighbors

“Harper has made me a better mother, and a better person."

JESSICA BONTEMPO, Harper's mom

Harper Allison isn't your typical toddler, though you wouldn't know it to see her – unless she raises her shirt to show you the surgical scars that map across her body.

Harper was born with gastroschisis, a condition diagnosed when her mother, Jessica Bontempo, was 20 weeks into her pregnancy.

“They told me I was having a girl,” Bontempo said. “Then the doctor came in and said there was a complication. Her abdominal wall was not formed and a small part of her intestine was outside the wall.”

Bontempo talks about procedures and diagnosis as though she has a medical background. She is a bartender at Smiles Nightclub & Bar and the Dog Pound Saloon.

Harper was born on August 20, 2013 in Orlando – 5 lbs., 5 ozs., and five weeks early. Hours later, before Bontempo would get to hold her second daughter, Harper was in surgery.

“There was no hospital locally, that can handle these cases, so they told me my options were Jacksonville and Orlando,” Bontempo said.

After talking to both hospitals Bontempo decided on Orlando because she didn't want to induce labor.

“I believed, that if she came out on her own, she would be able to handle the surgery better,” Bontempo said.

Bontempo explained the initial procedure, by drawing a diagram of how Harper's intestines had looked.

“I really have learned so much,” she laughed. “Dr. Jennifer Garcia (Holtz Children's Hospital) took time to teach and educate me, and break it down in terms I understand. Then I had to educate my family, so I could take an hour and go to the store.”

By the time Harper was five months old, she had been through five surgeries, and still hadn't been able to come home.

Harper was taken to Holtz Children's Hospital in Miami. There they learned the intestines weren't the problem any longer – the baby's stomach wasn't contracting as it should and a multi-visceral transplant would be needed.

“A multi-visceral transplant includes the stomach, the large and small intestines, the pancreas, and liver,” Bontempo said. “You can't just take the stomach and put it in with the other organs, you can end up with more problems along the way.”

Harper was put on the transplant list, January 2015. On March 9, 2015, they received the call to come to Miami immediately for a possible transplant. Nothing would be certain until the organs were deemed viable.

“We might get down there, and the organs might not be what they thought, and then we would have to go home,” Bontempo said. “At 5:30 a.m. they brought us down to the OR, and that's when I realized, 'this is really happening.'”

Bontempo was fully aware that for her daughter to have this opportunity, another family was in mourning.

“I know the donor was a 9-month-old boy from Atlanta,” Bontempo said. “I have never met the parents. I may write to them,” she said, her voice catching. “I just don't know what to say, or how to thank them.”

Harper has made it past the first year – a milestone for transplant recipients – but Bontempo knows anything can still happen. In the past week, she has taken Harper to the ER at Halifax Hospital, twice.

“Parents have to commit to the transplant,” Bontempo said. “You dedicate your life to it, especially the first two years. If she has a 100 degree temperature, we have to go to the hospital. If we have to go to Miami, we might stay four days, or a month. We lived in Miami for four months after the transplant – at the Ronald McDonald House for two, and I have an aunt who let us use her condo.”

Bontempo said she has been grateful for community support, and for her boss, Glenn Iannillo, who has been understanding about her unpredictable work schedule.

“He's family,” Janice Bontempo, Harper's grandmother, who has worked for Iannillo for 14 years, said. “He did a fundraiser and said if it raised $2,500 he would shave his head and wear a blue Mohawk. We did, and he did.”

High Tides at Snack Jacks also had a fundraiser that raised $2,500, to help with ongoing expenses, that include the gas needed to drive back and forth to Miami.

As Harper approaches her third birthday, the family recalled the pool party she had for her second birthday, a moment of normalcy that was short-lived.

“On September 6, our six-month mark from transplant, she had a fever and vomited,” Jessica Bontempo said. “We took her to Halifax ER, her belly wasn't moving, she was transported to Miami in an ambulance and I followed.”

Severe constipation, broken up by a scope in surgery, followed by a perforated intestine, and what was believed to be early rejection of the organs, put Harper back into the hospital for two months.

“It showed us, as a family, how quickly it could turn,” Jessica Bontempo said.

Plans are for Harper to go into a regular preschool this fall. She has been going to a special preschool with medically trained staff in St. Augustine.

The experience has Jessica Bontempo thinking about going back to school for a nursing degree.

“Harper has made me a better mother, and a better person. She has educated me in the medical field, and I want to pursue a career in nursing, in pediatrics to help other children and their mothers.”