Twin sisters Jesi and Remi came wailing into the world on May 15 as conjoined twins locked at the abdomen, the outline of the girls’ wiggling bodies looking to their parents like the shape of a beautiful heart. Two months later, University of Florida Health surgeons separated the babies.
What followed for parents Andre and Angi Pitre of Apopka, Florida, were exhausting months as they watched their babies slowly recover. A hospital stay for the girls that began at birth became a marathon. Remi would leave the hospital Oct. 4.
On Monday, the moment arrived for Jesi. The baby girl was discharged after 203 days in UF Health Shands Children’s Hospital. The sisters will be spending their first Christmas together.
“The best Christmas presents ever,” said Andre.
Jesi and Remi, born at the hospital with a shared liver and a connected intestine, were successfully separated July 23 by UF Health surgeons supported by a large multidisciplinary team in a surgery as complex as it is rare. Like all conjoined twins, the girls faced staggering odds. Indeed, up to 60 percent of conjoined twins are stillborn.
These girls, however, are fighters.
“It’s pretty amazing to watch them blossoming into little active 6-month-old babies that do normal 6-month-old baby stuff even though they’ve been confined to four walls the majority of their life,” said Angi. “And today is exciting because little Jesi gets to break through those walls and go home.”
While overjoyed at being home with both their babies, leaving the UF Health Shands neonatal intensive care unit and its dedicated staff was nonetheless bittersweet for the couple.
“We have built a family here over the last six months,” Angi said. “And it’s going to be hard to leave some of them because our babies are here because of them.”
David Nelson, M.D., interim senior vice president for health affairs at UF and president of UF Health, thanked the family for entrusting their babies’ care to UF Health.
“We’re so happy for the family to see the twins headed home, healthy and thriving, for what promises to be a very happy Christmas,” Nelson said. “The commitment of Jesi and Remi’s health care team makes us all proud, from the tireless nurses in the neonatal intensive care unit to the physicians who constantly monitored the twins to countless other staff. A complicated case like this one is always a team effort.”
Indeed, the care of the twins involved a broad spectrum of specialties and departments. Those included anesthesiology, cardiology, gastroenterology, neonatology and plastic surgery. Others involved, besides nursing, included respiratory therapists, operating room technicians, among other staff.
Since 2016, UF Health has cared for four sets of conjoined twins. Those include a successful separation that was especially complex because the twins were connected at the heart.
“Few hospitals across the United States are as equipped, capable and experienced to successfully perform these delicate surgeries,” said Ed Jimenez, CEO of UF Health Shands. “That is a tribute to our academic health center and its talented faculty, staff and rich tradition of scientific investigation, all of which helps provide hope where it is often slimmest.”
He said he was overjoyed to see the twins going home with mom and dad.
“It’s a testament to the resilience of these two beautiful girls, the perseverance and love of their family and the dedicated, talented pool of health care providers who worked around the clock to help ensure the twins have a bright, healthy future,’’ Jimenez said. “A case like this one reaffirms why we all work in medicine.”
Saleem Islam, M.D., M.P.H., chief of the division of pediatric surgery at the UF College of Medicine, who led the team that separated the babies’ organs, said Jesi and Remi’s case was, like any set of conjoined twins, a challenging one requiring a vast team coordinating care.
“The rule is that you are going to be surprised and there will be things that you simply cannot predict,” he said. “When we’re dealing with conjoined twins, unfortunately, there is no standard way of managing them. Each set of twins comes with its own unique issues and requirements.”
It all started for the Pitres in the eighth week of Angi’s pregnancy when she had a sonogram in Orlando. The couple already have a 14-year-old daughter and a 9-year-old son. Andre looked at the device’s display. “Am I looking at two heartbeats?” Andre asked the tech doing the exam. He was.
Twins. Their family was going to undergo a major expansion.
But the tech seemed concerned about something. Soon, their physician gave them shocking news. The twins appeared to be conjoined.
“It was overwhelming,” Andre said.
The Pitres later connected with UF Health after one of their doctors showed them a story about conjoined twins successfully separated in Gainesville in June 2016 — the twins joined at the heart.
After multiple scans and tests, Islam and his team confirmed that a separation was viable, which is often not the case with conjoined twins. Sometimes, shared organs cannot be separated, as when two babies share one heart. That is why only 5 to 25 percent of conjoined twins survive.
The first step toward separation was, weeks before, surgically installing skin expanders along the babies’ sides, from the armpit to the hip, one on the left of the connected twins, the other on the right. Balloons under the skin are filled with saline to slowly expand, the stretched skin later used to cover the babies’ open abdomen after surgery.
Preparation for the separation surgery involved an enormous amount of planning by Islam and others, including Jessica Ching, M.D., who placed the skin expanders and whose team would lead the reconstruction and closure of the twins’ abdomen. Ching is an assistant professor in the UF College of Medicine’s division of plastic and reconstructive surgery in the department of surgery.
“It’s amazing how many people have to come together to do it,” Ching said. “One of the biggest tasks is keeping everybody, including the family, on the same page.”
Finally, the big day arrived in July. The surgery would last up to five hours. Two anesthesia machines, one of each baby, stood ready, each with its tubing labeled to avoid confusion. Label colors, of course, were UF’s orange and blue.
The first part of the surgery involved separating the intestines, which were joined in a manner that created a common channel.
But the biggest challenge for Islam came later when he tackled the liver separation. In such a procedure, the liver separation is done in an area with the fewest number of crossing blood vessels. With Remi and Jesi, Islam found no clear plane of separation. So, using an intraoperative ultrasound, he moved with painstaking precision to avoid undue bleeding.
With the liver separated, Islam said, “Now, we had two babies.”
The surgical team called the parents to let them know. “To hear those two words that you have two babies, it was amazing,” said Angi. She hugged Andre and cried.
The surgeons then had to work on the very large abdominal wall defects and close the babies before the parents could see them in recovery.
The girls’ recovery proved challenging as they battled a wound infection, feeding issues and, for Jesi, serious respiratory difficulties, which lengthened her hospital stay. But Islam said such challenges aren’t unusual in these complicated cases.
“We were happy that the babies were actually fairly stable and we were able to manage them and control their recovery extremely well,” he said.
The Pitres had watched over two babies with one connected body for two months. As the babies recovered, all that, of course, had changed.
“I had gotten used to going to see my babies and standing at one bedside and being able to comfort both of them and see both of them and love both of them,” Angi said. “And now they’re in two separate beds. It was hard to decide which bed to stand next to. I was constantly going back and forth from bed to bed probably for the first hour, just to stare at them.”
Both she and her husband marveled at being able to see their faces in full. For so many weeks, the girls had been on their sides, face to face.
“Here they are laying on their backs,” Angi said. “We can see their full faces, their beautiful full faces for the first time. And they’re just so pretty.”
Andre credited the couple’s faith in helping them through the months of anguish and uncertainty.
“Christmas is always supposed to be about a very special baby,” he said. “And we’re fortunate enough to have had that special baby look after these special babies and give them as a gift to us.”
The girls, the couple said, will always have two birthdays. More precisely, July 23, the day of their separation, will be their “rebirthday,” said Andre.
The care team is happy to see the girls finally end this chapter of their medical journey. The babies will return frequently to UF Health for aftercare over the next few years.
“We’re very thankful when we take something so complicated — we have no idea what the outcome is potentially going to be — and watching them go home healthy,” Islam said. “It’s incredibly satisfying and pleasurable to have that happen, both from the standpoint of the teams that have been taking care of the babies, as well as for the parents who are going home with two healthy and fairly vocal babies. It most certainly requires a team effort to have a successful outcome”
“We’re all so pleased to have been involved in Jesi and Remi’s care,” said Ching.
Angi said there is more yet to come for her remarkable girls.
“In the end, their story isn’t over,” Angi said. “They’re blossoming. They’re growing. They’re thriving. They’re going to blow this world away with their little special personalities.”