Parents of once-conjoined twins share challenges, story beyond hospital

There's a long road ahead for twins Jesi, Remi Pitre

ORLANDO, Fla. – When they left University of Florida Health Shands Hospital in December, the Pitre family was ready to celebrate finally being under one roof again: It had been a long seven months.

Born at the hospital in Gainesville in May of 2018, Jesi and Remi Pitre were conjoined at the abdomen sharing one large liver and part of their intestinal tract. Two months later their separation surgery was complete and the babies recovered in the hospital neonatal intensive care unit.

The couple, who live in Apopka, opened up about the horrible scare with one of the twins, Jesi, immediately following their discharge from the hospital.

"She was on a very small amount of oxygen,” Angela Pitre said. “Two and a half days later, her right lung collapsed and we didn't know it.”

Jesi and Remi Pitre at 8 months old.
Jesi and Remi Pitre at 8 months old.

Jesi was cared for at Arnold Palmer Hospital and is now on a breathing machine that keeps her lungs inflated. Doctors told the parents as Jesi grows, she will develop new healthy lung tissue and eventually she will be able to come off the breathing machine and oxygen altogether.

Along with regular pulmonologist visits, the twins have appointments with a gastroenterologist, a cardiologist, their pediatrician, and surgeons in Gainseville.

Every car ride, both parents work as a team to transport and reconnect Jesi to her breathing machine and connect their feeding tubes. Because of their specialized medical needs, the twins cannot attend day care.

"You're the lifeline, you're the technician, you're the nurse -- so you have to stay calm, for their sake," Andre Pitre said.

In the last week, the couple faced another challenge. Angela went back to working full time, while Andre transitions into full-time caregiver for the twins.

"It's a little intimidating, but I don't go into it with any fear, because it's what I have to do,” Andre Pitre said.

While the couple admits it is difficult trying to pay off medical bills and support their family, including two older kids, they said they do not qualify financially for any government assistance.

The twins have a long road ahead, with multiple surgeries scheduled before doctors expect them to crawl or walk. Their parents however, aren’t counting out the possibility of more surprises.

"Conjoined twins are extremely rare, but surviving conjoined twins are even more rare, and that's what we learned through this this whole journey is how blessed we are,” Angela Pitre said. “They're our baby girls, we'll do anything that we need to, and we'll face those challenges, because we get that opportunity."

Anyone who would like to help the Pitre family can visit their fundraising page here.

About the Author: