Knatalye and Adeline Mata share an intimacy most twins will never know.
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.
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.
With months living in the neonatal intensive care unit, multiple surgeries, followed by many more months of care, the Matas are facing potentially millions of dollars in medical costs. They launched a Facebook page called "Helping Hope and Faith," with information about the twins and how people can donate.
First, Knatalye and Adeline underwent surgeries to stretch their skin using tiny balloons filled with saline in order to have enough skin to cover their conjoined organs after separation.
On the day of the separation surgery, Elysse had a hard time parting with her daughters, knowing it could have been the last time she got to see them alive.
“I just don't want to lose them, and I know there's that risk,” she said. “But I have this peace of mind, this faith in God that he's done everything for a reason and that he's got control of it, and I feel like he's going to bring them through it.”
More than 20 family members camped out in the hospital waiting room, some driving as many as four hours to show support, as the doctors got to work.
It took six hours of preparation before the first incision was made. Every two hours, Elysse and Eric were given updates over the phone. But then they knew there had been a complication when doctors asked them to come for an update in person.
Terrified and anxious, the parents listened as the anesthesiologist told them there was “a fair amount of bleeding” when the girls’ liver was divided and Adeline’s heartbeat started to slow down. They got her heart rate up, the doctor said, and were proceeding.
“We had some challenges there that we had to work through, but thanks to Doctor McKenzie our pediatric heart surgeon things are looking good now,” Dr. Cass said.
Fifteen hours into surgery, the surgeons continued to work their way down the twins’ body, separating the bladders and the uteruses. Finally, 18 hours into the surgery, the girls were no longer conjoined. But their chance at survival remained in the balance, because of the risk of too much blood loss.
But 23 hours into surgery, six hours after separation, Knatalye was taken to recovery. Her sister followed a few hours later.
Everyone was emotional as the family and the medical team hugged each other and cheered.
“It’s very, very heartwarming actually to see them come out and be separated,” Dr. Cass said, through tears. “I guess my emotions are a little bit raw right now just from being a little bit sleep deprived but they’re just amazing girls, it’s an amazing family.”
Today, both girls are still recovering from the surgery, but are awake and doing well. Although they are separated, they remain together, fulfilling the legacy of their middle names: Hope and Faith.