They had lived face-to-face, heart-to-heart, sharing every breath as conjoined twins since they were born 10 months ago. But to give them both a chance at an independent life, the two infant girls underwent a highly complicated and risky surgery at Texas Children’s Hospital in Houston to be separated.
Each separation surgery is different, and presents its own challenges and potential complications. Texas Children's Hospital officials said they hadn't performed a separation surgery this complicated before. But the twins’ parents, Elysse and Eric Mata, decided they had no other choice than to put their babies through the surgery.
“I want to give them a shot at a normal life as much as possible,” Elysse Mata said. “I feel like they've come this far, why hold back? Why not follow through? Why not give them that chance?”
That Knatalye and Adeline have made it this far is remarkable. Roughly 200,000 conjoined twins are born each year. As many as 60 percent of conjoined twins are stillborn, and about 35 percent only survive one day. Past that, conjoined twins have a 5 to 25 percent chance of survival.
“Nightline” was there as a team of 12 surgeons spent 26 hours performing the separation surgery on Knatalye and Adeline last Tuesday and Wednesday, and also with the Mata family, as they received updates on their daughters’ condition.
Watch the full story, including the twins' surgery, on "Nightline" tonight at 12:35 a.m. ET
Elysse and Eric had been waiting for that day since they first found out during an ultrasound they were expecting twins.
“I looked at my husband, he was just like, you know, jaw drop,” Elysse said. “Then, [the doctor] said, ‘But we think they're conjoined.’ And my heart sunk in that moment and I just froze… I was like, ‘this can't be real.’”
The two infant girls were conjoined from the ribcage down to their pelvis, and some of their internal organs, including their liver and lungs, were fused together.
When she found out the twins were conjoined, Elysse, 25, said, doctors talked to her about terminating the pregnancy, but she said that was never an option.
“I told him, ‘I don't care what the case is, I'm going to go as long as I can, and if God decides that he needs them more, then so be it,’” she said.
But there was hope once doctors learned the girls each had their own hearts, beating separately on their own.
On April 11, 2014, the two sisters beat the odds and were born alive, nine weeks premature, at Texas Children’s Hospital. Eric and Elysse decided to give the girls meaningful middle names: Hope and Faith.
“It was heaven on earth, just to be able to hold them so close to me,” Elysse said. “Everybody talks about when they see their baby, they don't count their toes, they just see a baby… I just saw two miracle angels laying there, peacefully sleeping.”
But after they were born, the babies had to stay in the intensive care unit until the surgery, so Eric, 29, Elysse, and their 5-year-old son, Azariah, uprooted their lives in Lubbock, Texas, to live in an RV near the Houston hospital. Eric commuted eight hours each way from Lubbock to see his wife, son and newborn babies.
Over the next few months, the babies thrived in the NICU, but a team of nurses performed everyday tasks, such as bathing and diaper changing.
At 10 months old, doctors determined the girls had a good chance of surviving the separation surgery, so a team, led by Dr. Darrell Cass, began to prepare. They spent months creating 3-D models of the babies’ insides and practiced on mannequins. Despite all the preparation, there was still a chance the girls would die in surgery.
“Separating conjoined twins is a very complicated task and there are lots of risks involved, and death is absolutely one of those risks,” Cass said.
