Successfully separated conjoined twins return to Fort Worth home for first time after surgery

When JamieLynn and AmieLynn entered the world on Oct. 3, the twin sisters were joined at the chest and shared a liver.

Now, after an 11-hour surgery to successfully separate the twins and months of additional hospital care, both girls have returned to their Fort Worth home for the first time.

The twins were the first pair to be successfully separated at Cook Children’s Medical Center in a surgery in January. One daughter, JamieLynn, was released from the hospital March 21. Her sister AmieLynn was released from the hospital Friday.

Cook Children’s physicians and the girls’ parents, Amanda Arciniega and James Finley, announced the latest step in their journey at a press conference Wednesday.

When they were born, the girls were joined from the lower part of their breast bone to their belly button, said their doctor Dr. José Iglesias, the lead surgeon in their separation operation, in January. For the first 16 weeks of their lives, the twins were face-to-face. They shared a liver that was effectively a double liver, Iglesias said, but had separate hearts and lungs. At least 25 health care workers participated in the surgery.

After the surgery, both girls needed additional time in the hospital for their wounds to heal and for doctors to monitor their progress. Amie, in particular, needed extra care and attention, which is why she wasn’t able to leave the hospital until several weeks after her sister.

“Amie gave us a few little curveballs, which kept her around a little bit longer,” Iglesias said Wednesday. “The way her heart ended up settling was pushing on some structures.”

Now that both girls have returned home, they still have many doctors’ appointments ahead of them. But now, most of their medical care will be like any other infant’s, and focused on making sure the girls hit the same developmental milestones as any other child, like being able to crawl and pull themselves upright. Both girls still have small gastrostomy buttons in their stomachs, which allow their parents to send food and medicine directly to the girls’ stomachs, Iglesias said. These buttons are frequently used for infants who, for whatever reason, aren’t getting enough calories for the food they can consume by mouth. Eventually, their doctors hope the girls will be strong enough to eat all of their food by mouth.

Amie has scoliosis, and will also require rehab, he said.

Conjoined twins include any infants who are born with their bodies connected. At least three out of every four conjoined twins are joined partially in the chest, and share one or more organs, according to the Children’s Hospital of Philadelphia.

Exact numbers of how many conjoined twins are born each year, and how many survive, are not known. Estimates vary widely, from 1 in every 30,000 live births to 1 in every 200,000 live births. Although the exact frequency is unknown, physicians do know that conjoined twins have small chances of survival.

After the surgery, there were still scary moments for the family.

“We got to hold Jamie first, because Amie was still intubated,” their dad, James Finley, said Wednesday.

For almost a month, Amie’s parents weren’t able to hold her while she stayed in a protective nest of tubes, wires, and beeping machines, Finley described.

On Wednesday, Amie and Jamie joined their parents on a small stage outside Cook Children’s Medical Center, where they lay in separate baby carriers. Jamie reached out to squeeze her dad’s hand, smiled up at her nurses who joined her on stage, and even sat in her dad’s lap as he answered questions. Amie, who is not quite as boisterous as her twin, stayed close to her mom, who made sure to tuck a pink blanket around her as the wind started to pick up.

The main thing the family is focused on now, Finley said, is making sure the girls get all the food and medicine they need to continue growing.

“Other than that, they’re just babies,” he said.

The Finley family has created a fund at the EECU Community Foundation, to help cover the cost of the girls future health needs. The family also has a baby registry at Walmart. Included on the wish list is a stroller big enough for two.