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Sunday, June 18, 2017

A Sweet Separation

Posted By: Advancing Care

Maria Fareri Children’s Hospital gives conjoined twins the chance at a normal life.

By Ali  Jackson-Jolley

When Laurilin Celadilla and Abel Camacho welcomed their twin daughters into the world in early 2016, their greatest wish was that the girls would grow up to live happy, normal lives. But it was a dream that the couple from the Dominican Republic worried was unattainable, as the twins, Ballenie and Bellanie, were born conjoined. Connected at the base of the spine, the girls shared portions of their spinal cords, gastrointestinal tracts, as well as a major artery and other systems. So, when a family contact got word that Maria Fareri Children’s Hospital, a member of the Westchester Medical Center Health Network (WMCHealth), thought they may be able to help by taking on the challenge of separating the girls, the couple didn’t hesitate.

“We got the official word on August 8th and left by August 13th,” remembers Celadilla, who left behind a job as a bank cashier, while her husband left a lucrative job managing a financial institution. “We didn’t think it was within reach to separate the girls, so when that possibility opened up, there was never any question about if we would go.”

Leaving the girls’ sister Linabel, 2, and half-sister Sheily, 10, in the care of family, Camacho and Celadilla set off with the twins for the U.S. “We immediately said goodbye, left work and traveled to the United States,” Camacho explains.

Located thousands of miles away and an ocean apart from Santo Domingo, the doctors and medical staff of Maria Fareri Children’s Hospital first learned of the twins’ case thanks to Marleny Garcia, a family friend of Celadilla and a former employee of Westchester Medical Center, the flagship of WMCHealth. Garcia heard about the conjoined twins while visiting the island, then brought the case to the attention of pediatric surgeons at Maria Fareri Children’s Hospital.

The Camacho twins prior to their groundbreaking 21-hour separation surgery.

The surgeons advised Ms. Garcia to discuss the case with Michael Gewitz, MD, the William Russell McCurdy Physician-in-Chief at Maria Fareri Children’s Hospital. Having worked at the Children’s Hospital of Philadelphia in the 1970s, during one of the first-ever cases in which conjoined twins were separated, Dr. Gewitz appreciated the complexities of assessing the feasibility of the case, as well as overseeing the logistics and assembling and coordinating the medical, surgical and support staff required.

According to Gewitz: “Each individual component of the separation was interdependent. The separation entailed complex neurosurgery, urology, abdominal and vascular surgery, orthopedic surgery, plastic surgery and wound care. But the complexity of each component was not the issue for Maria Fareri Children’s Hospital. As the region’s only acute-care children’s hospital, taking on the most critical cases is something these doctors have done from the very beginning.” Gewitz explains that the greatest challenge lay in putting all the multidisciplinary pieces together in one coordinated sequence simultaneously for the two children. “After assessing the case, I believed that since we already had all of the components in place, it was time for us to step up to the next level and put them all together,” Gewitz says. In addition to the surgical teams, in-depth involvement of pediatric anesthesiology specialists and pediatric hospitalists would also be required for the perioperative and recovery phases.

In the weeks prior to Ballenie and Bellanie’s August arrival at Maria Fareri Children’s Hospital, Gewitz gathered all the relevant surgical specialists into one room and, enlisting help from Westchester Medical Center’s eHealth telemedicine program, conducted a remote evaluation of the babies, who were still in the Dominican Republic. “We found the diagnostic information was even better than was anticipated, so the babies were brought here to be further examined and undergo sophisticated imaging that allowed us to create 3D models of the twins’ internal and external anatomy. This, in turn, enabled the surgeons to plan their approach and procedures,” Gewitz explains. It was decided the twins would be separated in stages, with the initial operation in November, during which time surgeries would establish separate gastrointestinal tracts for the babies and prepare their skin for subsequent separation.

Then, on January 17 — four months after they first arrived at Maria Fareri Children’s Hospital — the long-awaited separation surgery for the 11-month-old twins began. “As parents, we were very nervous because we knew the girls were going through a long, difficult, risky procedure. But we were not overwhelmed with fear, because the hospital was always confident,” recalls Camacho. Offering his medical perspective, Gewitz says, “We were confident because of the extensive preplanning and preliminary testing that was done. It also helped that each individual team had done numerous complicated procedures over the years. The experience was here; it all just had to be sewn together.”

Over the course of the 21-hour separation procedure, more than 50 medical staff, including separate teams of nursing and technical specialists for each baby, worked to separate the girls. The surgery went off without a hitch, and for the first time in their short lives, the twins were separated from each other. “When I saw them for the first time after they were separated, I couldn’t believe it was real; I just stared at them!” Celadilla remembers. “We were full of joy. It was like a dream come true,” adds Camacho

The twins celebrated their 1st birthday at Maria FareriChildren’s Hospital two weeks after their surgery.

Since the separation, the girls have turned 1-year-old (having celebrated the occasion during a birthday party at the hospital with the doctors, nurses and staff). Though Ballenie and Bellanie were released from the hospital in late March, they still require extensive outpatient therapy, so the family will remain in the area a little longer.

“If their recovery to date is predictive of their future lives, we are very optimistic they will make full recoveries,” says Gewitz. As to the girls’ future: “I see two little happy girls playing at school and running around the house,” says Celadilla. Camacho adds, “I want them to achieve all of their dreams and wishes, and to live normal lives. I don’t see any obstacles at all for them to live a happy existence. For this, our gratitude to the doctors and Maria Fareri Children’s Hospital will live forever.”