Knatalye and Adeline Mata work with their physical therapist Frank McCormick several times a week after being separated.
By Veronika Javor
It was a moment more than a year in the making. Elysse and John Eric Mata finally packed up their truck and a U-Haul and began their nine-hour drive back to Lubbock. That journey would be the start of a new life as a family of five, living together for the first time outside of hospital walls. But this new beginning did not come without obstacles, as for several months, the Matas’ energies had been solely focused on one goal — their twin daughters’ recovery from historic separation surgery.
Formerly conjoined twins Knatalye and Adeline Mata spent the first few months recovering at Texas Children’s Hospital, even celebrating their first birthday with a family party in a hospital conference room. Post-separation, both girls underwent additional surgeries, including the removal of metal rods in their pelvises and shunts in their bladders that were inserted during separation. Each twin required a gastrostomy, which includes a button and special tube to help regulate and deliver food and medicines until a child can chew and swallow. Adeline also needed a tracheostomy to help her breathing and lung development.
Throughout their recovery, the girls received physical and occupational therapy to aid in their development, learning to grasp objects and to sit on their own. But Elysse Mata, the girls’ mother, described the joy of seeing her daughters “light up” when they had the opportunity to play and interact with one another during therapy together.
The girls, whose recovery is described by lead surgeon and Texas Children’s Fetal Center Co-director Darrell Cass, MD, as “remarkable,” soon grew stronger and Knatalye was discharged on May 8 — just three months after the complex separation surgery. Adeline followed on June 9, joining her sister, her 6-year-old brother Azariah and her mother in a temporary apartment donated to the family by a local church.
Though both girls were discharged, the family stayed in Houston for another month for outpatient clinic appointments at the hospital that were part of the girls’ follow-up care.
“It hasn’t really sunk in yet,” said Elysse in the first few days after both girls were discharged. “Once we get home, I’m pretty sure it’s going to feel amazing.”
Eager to return home, the family got the news that the girls could travel to Lubbock just in time for Independence Day. Their homecoming, though a joyful milestone for the family, also came with challenges. Because Adeline had a tracheostomy and continues to receive support from a ventilator, the Mata family has a home nurse who helps care for her. Both girls also receive physical, occupational and speech therapy services at home.
The sisters will return to Texas Children’s every couple of months for follow-up appointments with specialists who will monitor their progress, growth and development. They may also require additional surgeries in the future.
Even with the challenges of adjusting to life at home, the Mata family is thankful to have some normalcy back in their lives.
“It was a long road to get to where we are,” Elysse said. “But it was well worth the wait for our girls to be able to come home happy and healthy, with the ability to lead independent lives.”
Cass is already peering far down the road. Successful separation was one milestone, but the reward, he said, will be in the quality of life the girls are afforded in years to come.
“When I first met the Mata family and learned of the diagnosis, I was optimistic we would have a positive outcome,” Cass said. “It is with great joy to have watched them leave the hospital, and I look forward to the day Elysse shares with me pictures of these beautiful girls walking into kindergarten together.”
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