One month after their successful separation surgery, Knatalye and Adeline Mata are progressing well as two separate little girls.
Knatalye can breathe on her own and was recently transferred to the Progressive Care Unit where she will resume her recovery. Her sister, Adeline, is still on a ventilator in the Pediatric Intensive Care Unit (PICU), but her doctors remain optimistic that she will breathe on her own just like her twin.
“Knatalye’s progress has been a tiny bit faster than Adeline, but it was just because of where they started out,” said Dr. Darrell Cass, co-director of Texas Children’s Fetal Center. “We’re still in the acute recovery phase of care where we’re working on breathing, sedation and pain management and working on their intestinal function.
Prior to the girls’ separation surgery, Knatalye and Adeline spent the first 10 months of their life in the Neonatal Intensive Care Unit (NICU) where they received daily care from their team of NICU nurses. To adequately prepare them for their separation surgery, the NICU nurses helped engineer a custom bed space for the girls in the NICU and collaborated with Hanger Clinic, to devise a swing that would safely keep the twins upright for a large portion of each day after their tissue expanders were in place.
“We emotionally, physically and intellectually invested a lot of care in the girls,” said Alex Luton, a clinical nurse specialist at Texas Children’s Newborn Center. “I know it was a difficult but necessary transition for them to go to the PICU.”
To ensure a smooth transition of care for the girls and their family, the NICU nurses partnered with the PICU team before and after the separation surgery.
“We sent a couple of nurses per shift for the first few days post operatively to kind of be there as a familiar face for the family as they began to build their relationships with nurses in the PICU,” Luton said.
Each of the babies had a PICU nurse and a NICU nurse for the first few days after separation surgery.
“As they stabilized and their condition improved, one nurse was assigned for each baby,” said Shannon Holland, assistant director of nursing in the PICU. “Now, they have one nurse for the two babies together.”
In addition to receiving around-the-clock care from the PICU nurses, Knatalye and Adeline receive therapy every day – physical therapy in the morning and occupational therapy in the afternoon to optimize their muscle development and motor coordination.
“We are practicing a lot of reaching and grabbing using both hands, bringing their hands together, banging toys together, visual tracking, “said Texas Children’s occupational therapist Chelsea Pierce.
Texas Children’s physical therapist Frank McCormick assists the girls with head control, trunk control, stretching, range of motion and working with their feet.
“The sessions are dictated by kind of what they can tolerate,” McCormick said. “Usually 30 minutes is a window, but if they can go further and are still awake and participative, then it can go upwards of 45 minutes to an hour.”
While Knatalye and Adeline’s recovery will take some time, their doctors are optimistic about their future.
“We would expect their gait, their walking stride, to be somewhat altered initially,” Cass said. “We’ll have to monitor them. With some therapy, we’re optimistic that they will be able to walk and live a normal life.”
Texas Children’s Surgeon-in-Chief Charles D. Fraser also shares that same spirit of optimism.
“This is another example of why a case like this should be done at Texas Children’s because we have the team and expertise to handle complex medical conditions,” Fraser said. “I am very, very confident that we will continue to move them on a positive recovery trajectory.”
Connect videos of the Mata twins:
Voices of Nursing: NICU nurses’ reflection on caring for the Mata twins
Hope, faith and expertise: Surgical team leads historical Mata conjoined twins surgery
3D Model of Mata twins helps surgeons prepare for girls’ separation
Positioning team designs, builds swing to help conjoined twins sit up
Mata conjoined twins take first step toward separation with tissue expansion