As the Mata twins began to grow, members of their care team developed a U-shaped device to keep the girls upright for lengthy periods of time.
By Kimberly Vetter
When their lives were instantly changed by learning they were expecting conjoined twin daughters, Elysse and John Eric Mata traveled to Houston for the world-class care at Texas Children’s Hospital. The 10 months leading up to the girls’ separation presented a series of firsts for nearly everyone involved, as well as meticulous planning and preparation to help ensure a successful surgery.
When Elysse and John Eric Mata decided to start a family, they never imagined they would have twins. So when they learned that their girls were conjoined — a phenomenon that occurs in only one of 200,000 live births — their astonishment was twofold.
“We were shocked,” Elysse Mata said. “We also were scared.”
But they did what any concerned parents would do. They found a medical home offering world-class care for complex maternal-fetal conditions. After choosing Texas Children’s Hospital and getting to know the team of experts who would spend the next 18 months shepherding them through the birth and separation of their daughters, many of the couple’s fears subsided.
Extensive prenatal imaging and multidisciplinary consultation at Texas Children’s Fetal Center revealed the girls were connected from the chest to the pelvis — sharing a chest wall, pericardial sac, diaphragm, liver, intestinal tract, urinary system and reproductive organs.
“The girls had a thoraco-omphalo-ischiopagus connection, which is very complex,” said Darrell Cass, MD, pediatric surgeon, co-director of Texas Children’s Fetal Center and associate professor of Surgery, Pediatrics and Obstetrics and Gynecology at Baylor College of Medicine. “Their anatomy was as complicated as it could be and still be separable.”
After weeks of careful monitoring, Knatalye Hope and Adeline Faith Mata were born at Texas Children’s Pavilion for Women on April 11, 2014, at 31 weeks gestation via Caesarean section. But their eventual separation would require extensive preparation from numerous specialists.
Before undertaking the complex task, Cass and the rest of the girls’ multidisciplinary care team allowed Knatalye and Adeline to grow and gain strength for more than 10 months. During that time, the twins received specialized care, including a five-hour surgery at Texas Children’s main campus to place custom-made tissue expanders into their chest and abdomen area. Several times a week, fluid was added to these balloon-like devices, allowing the girls’ skin to gradually stretch. This new skin would be used to provide coverage once the babies were separated.
“When the babies are connected at the chest, the belly and the pelvis, and you separate the babies, that whole area of connection simply doesn’t have enough skin to close,” said Larry Hollier, MD, chief of Plastic Surgery at Texas Children’s and chief of the Division of Plastic Surgery at Baylor College of Medicine. “So we needed enough good tissue with a reasonable blood supply to cover all of that. The only way we could really do this was by creating it before surgery with the tissue expanders.”
To keep pressure off the tissue expanders and to help the girls continue to develop normally, nurses Jennifer Pitlik and Jennifer McGinnis and physical therapist Frank McCormick worked with experts from the Hanger Clinic — specialists in orthotics and prosthetics — to create a device that would safely keep the twins upright for a large portion of each day.
Together, they developed a U-shaped device that supported the girls’ backs, bottoms and heads. The device’s headrests were removable to allow for more movement, and the main portion of the device was equipped with liners that could be taken out as the girls grew. The twins were suspended from a Hoyer, typically used to lift immobile patients from one place to another. The staff began to refer to the device as “the swing.”
“The girls loved it,” McGinnis said. “They pushed off with their feet, so they were able to swing and move around, and since they were both upright, they were able to make eye contact with other people.”
Meanwhile, the rest of the girls’ care team spent hours planning for and simulating the separation surgery, even creating an intricate 3-D model of the twins’ anatomy. With help from MedCad, a Dallas printing company, Texas Children’s chief of Radiology Research Imaging, Rajesh Krishnamurthy, MD, created the model using a computerized image data set of the twins and a 3-D printer. The detailed model included a detachable liver, which was especially helpful in the planning of the pelvic portion of the surgery — a part of the procedure that would be challenging because the blood supply for each of the girls’ pelvic organs was shared.
“Three-dimensional modeling is a visual representation of the complexity that surgeons might encounter during a procedure,” Krishnamurthy said. “It’s a very powerful tool when you are trying to develop unique solutions to challenging situations, such as the Matas’.”
As the date of the separation surgery got closer, the comprehensive team of surgeons, physicians, nurses and support staff assigned to the Mata case continued to prepare for the big day. The lead surgeons met and thoroughly examined every aspect of their procedure, the simulation staff prepared the team for potential complications, and critical care nurses readied the pediatric intensive care unit for the girls post-surgery.
By the time the surgery was scheduled, everyone, including the Mata family, felt satisfied with the care team’s preparations and optimistic about the surgery’s outcome.
“I have an extreme amount of faith in the team at Texas Children’s,” Elysse said prior to her daughters’ surgery. “I know God put us here for a reason.”
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