The basic desire parents feel to protect their children is a vital part of human nature. Therefore, it’s hard to imagine the helplessness one couple must have felt as they watched their babies get wheeled off to a surgery that had never been successfully completed before. But with faith and hope, that’s exactly what the Mata family did when they decided that their conjoined twins should be separated.
However, at first Elysse and John Mata were no doubt delighted when they found out that they were expecting twins. What’s more, the Lubbock, Texas, couple – who were already parents to a five-year-old son – would now be adding two little girls to their family. And things seemed to be progressing normally in the pregnancy until January 2014, when the couple attended a routine scan.
It was then that the Matas learned the terrifying news that their twin girls were in fact conjoined. According to data from the University of Maryland Medical Center, conjoined twins account for one in every 200,000 live births. However, approximately 40 to 60 percent of conjoined twins are stillborn, while about 35 percent will survive only the first 24 hours.
So, given the seriousness of their predicament, the Matas were referred to the Texas Children’s Fetal Center. The facility has experts focused specifically on the treatment and care of babies with abnormalities, and it is able to give specialized treatment and care to unborn and newborn infants as well as their mothers.
But even still, the Mata twins were an exceptional case. Then in April 2014, at 31 weeks into her pregnancy, Elysse was scheduled for a cesarean section and gave birth to twins Knatalye and Adeline. The tiny babies weighed just three pounds and seven ounces each. And the girls were given the middle names of “Faith” and “Hope” after doctors gave them a mere 20 percent chance of survival.
The babies, it turned out, were thoraco-omphalo-ischiopagus conjoined twins and were sharing a number of major organs. These included their heart lining, lungs, diaphragm, pelvis, chest walls, colon, liver and intestines. Still, despite the difficulties that would be involved, it was decided that every effort should be made to separate Knatalye and Adeline.
What followed, then, was months of preparation; doctors simulated practice runs of the planned surgery and even created 3D models of the twins’ organs. Finally, in December 2014 Knatalye and Adeline were scheduled for an operation that would be their first step towards separation.
The five-hour procedure saw custom-made tissue expanders placed in the girls’ chest and abdomen. Over the course of a few months, the expanders would stretch the twins’ skin in preparation for their final separation surgery. Thankfully, however, this first operation went as planned.
“On a regular basis, additional fluid will be added to the tissue expanders, which are like balloons, to allow the skin to be stretched gradually. We anticipate needing extra skin to provide coverage once the babies are separated,” Dr. Larry Hollier, chief of plastic surgery at Texas Children’s Hospital, explained in a December 2014 press release.
And as everything was progressing as it should, the time soon came for the babies to have their separation surgery. On February 17, 2015, then, a team of six anesthesiologists, eight surgical nurses and 12 surgeons assembled to complete the complex operation. None of these experts knew for certain how the procedure would go.
However, an incredible 18 hours into the operation, surgeons made a breakthrough: the girls were successfully separated. The amazing feat had involved experts from a number of fields, including those in plastic surgery, cardiovascular surgery, liver transplant surgery and orthopedic surgery.
Then, after 23 grueling hours, both twins were fully separated and doing well. “This surgery was not without its challenges with the girls sharing several organ systems,” pediatric surgeon Dr. Darrell Cass announced in a February 2015 press release. “This is the first time a separation surgery for thoraco-omphalo-ischiopagus twins with this particular configuration has been successful.”
The surgeon also revealed that the operation had affected him in a profound way. “Seeing the girls wheeled out of the operating room as separate patients, on separate gurneys, the ramifications for them to live private lives was even more poignant and powerful than I expected. It literally brought tears to my eyes,” Dr. Cass said to the Houston Chronicle in June 2015.
And while the hospital team were no doubt over the moon by the medical advancements they had just made, no one was more happy than Knatalye and Adeline’s family. “We are so grateful to all of the surgeons and everyone who cared for our daughters and gave them the incredible chance to live separate lives,” said mom Elysse in the hospital’s February 2015 release. “We are so blessed to be at a place like Texas Children’s where we have access to the surgeons and caretakers that have made this dream a reality.”
“We also want to express our gratitude to all of the people that have prayed and provided support to our family over the last ten months,” she added. Finally, then, the future had begun to look bright for the girls. And although it was likely that both twins would need more operations as they got older, Dr. Cass confirmed to the Houston Chronicle that the team was “very optimistic that they will both have a really great outcome.”
What’s more, Knatalye and Adeline could now begin their lives as two separate little girls. Still, there was work to be done: during their first month apart, in fact, the girls underwent physical therapy everyday. Thankfully, they made excellent progress – to the point that they were able to celebrate their first birthday with a Frozen-themed party in the hospital.
“God, it’s been a year. It went by so fast. I feel like just yesterday they were born,” Elysse reminisced on the big day. “Now they’re good and healthy and hopefully headed towards home.” Dr. Cass agreed, adding in an interview with Today that “they’ve made tremendous progress and I can’t be happier with how they’re both doing. In fact, they’re doing shockingly well.”
Finally, during the summer of 2015, the Matas were able to take their baby girls home. And Knatalye made incredible progress, quickly mastering crawling and eventually beginning to walk. She even began eating normally. Meanwhile, Adeline, who faced more health difficulties, was still working on being able to breathe on her own.
Then, on February 17, 2016, the girls celebrated another milestone: the one-year anniversary of their separation surgery. To mark the day, moreover, the Texas Children’s Hospital made a video documenting Knatalye and Adeline’s incredible journey. “They are reaching developmental milestones, they’re branching out and growing as individuals with separate personalities,” mom Elysse revealed in the clip.
Now two years old, the girls are continuing to make progress; even dad John has admitted to Today that “they’ve far exceeded [his] expectations.” And, although they’re no longer conjoined, the girls still share a bond like no other.