Andre and Angi Pitre were shocked — but excited — to be having twins.
But during the first ultrasound in October 2017, he said, the technician grew quiet, then ushered them into an exam room. It was there the couple learned the news: Their twins were conjoined. The doctor told them how hard it would be — most conjoined twins are stillborn and some of them don’t survive surgeries intended to separate them.
“It can be a lot of care. It can be a very difficult road,” Andre said in a phone interview. “I wouldn’t say we were scared of it; we were more worried about our babies.”
At the time, the couple, from Apopka, Fla., knew the twins were conjoined at the abdomen but were not sure how. After the girls, Jesi and Remi, were born May 15, doctors at the University of Florida Health Shands Children’s Hospital learned that the newborns shared one big liver and that their intestines were connected. Doctors started putting together a plan to separate them.
More than two months later — after procedures to prepare them for separation and a six-hour surgery to do it — Jesi and Remi were finally apart.
Remi was released from the hospital Oct. 4, and Jesi, who experienced complications, was discharged earlier this week. The Pitres will be moving their now-6-month-old daughters home to Apopka over the weekend, Andre said.
“We had people praying everywhere,” the 35-year-old added. “It was a scary situation, but to be connected the way they were was best-case scenario.”
Angi had two children from a previous marriage when she and Andre got married in 2016, but the couple wanted to have a child together.
When they discovered that they were having twins in 2017 — and that the babies were conjoined — they started seeing specialists at the children’s hospital, driving back and forth from Gainesville to their home in Apopka, Andre said.
Angi took her maternity leave, which evolved into unpaid leave, and Andre continued to work on a farm in Orlando. The couple also started a GoFundMe page to raise money for medical expenses.
After the twins were born in May, and for many months after that, Angi started staying near the hospital while Andre managed things back home, making the two-hour commute on the weekends to see his wife and his newborn daughters, he said.
Surgeon Saleem Islam, chief of the division of pediatric surgery at the UF College of Medicine, said the twins shared a common liver, which was about the size of two, and that their intestines were connected by a common channel.
With identical twins, an embryo splits during pregnancy; but with conjoined twins, the embryo does not separate all the way and the twins stay connected.
Conjoined twins are uncommon, occurring once in about every 50,000 to 60,000 births, according to the Children’s Hospital of Philadelphia. Some 75 percent of them are connected at the chest and share common organs, the hospital said.
The severity depends on how and where the twins are conjoined.
Islam, the lead surgeon on the case, said that doctors, nurses and medical personnel from two surgical teams spent several hours in July separating the twins. Still, he said, the girls were left with “very large defects” because they had shared an abdominal wall, so the surgeons used biologic surgical mesh to cover the liver and intestines; he said the girls will need at least one surgery in the future to fully close the abdominal wall.
“We anticipate a full recovery — full, normal lives,” Islam said. “We feel incredibly thankful that were able to have successful outcome in this case,” he added.
Andre said that because Jesi and Remi were hospitalized and intubated for so long, they never learned to breast-feed or eat on their own, so for now, they still require the use of feeding tubes. And the girls, who have not been able to move around like other babies, are also doing physical therapy to help them properly develop as quickly as their personalities are, he said.
Andre said that Remi is a bundle of energy, “babbling on and on.” Jesi is the analytical one, devising her plan to take over the world, the father said, laughing.
After so much time planning their births, preparing for their surgeries and working to help them recover, Andre said he is excited and relieved to have his family under the same roof. When the Pitres move home this weekend, they will put their twins in the same room — an ocean-themed nursery with blue walls, mermaids and sea shells on the shelves.
But, the father said, the girls will have separate cribs.