Taking care of conjoined twins, Knatalye Hope and Adeline Faith Mata, is hard, even for the highly-trained medical staff charged with looking after the two 9-month-old girls.
Diaper changes, baths, feedings, even moving the girls from one place to the other takes a lot of effort, thought and hands. So, when the team of surgeons assigned to the twins asked the girls’ primary nurses and physical therapist to figure out a way to help the twins sit up, Frank McCormick, Jennifer Pitlik and Jennifer McGinnis were stumped.
“We were all just deer in the headlights,” said Pitlik, one of the twins’ primary care nurses.
McCormick, the twins’ physical therapist, had devised things to hold the girls upright before, but Knatalye and Adeline always outgrew them.
“We had to come up with something else,” McCormick said.
The surgeons wanted the girls upright to keep pressure off the custom-made tissue expanders they put in the girls’ chest and abdomen area last month. The expanders will help stretch the babies’ skin in preparation for their separation surgery, which is expected to take place next month. The surgeons also wanted the girls to spend time sitting up so they could continue to develop normally.
“Most 9-month olds are crawling and pulling up on things,” Pitlik said. “So, for them to just lay in a hospital bed all day is difficult.”
For a little more than a month, Pitlik, McCormick and McGinnis, the twins’ other primary nurse, worked with Hope Whitten, an orthotist and prosthetist at Hanger Clinic, to come up with a device that would safely keep the twins upright for a large portion of each day.
What they came up with was a u-shaped device that supports the twins’ backs, bottoms and heads. The device’s headrests are removable to allow for more movement and the main portion of the device is equipped with growth liners that can be taken out as the girls continue to get bigger.
In addition, the device suspends from a Hoyer, which normally is used to lift patients who are unable to move from one place to another on their own. In the twins’ case, the Hoyer will allow staff to lift the girls up or down while they are in what has come to be called, “the swing.”
“They love it,” McGinnis said of the swing. “They push off with their feet, so they are able to swing and move around, and since they are both upright, they’re able to look at people in the face.”
Whitten, who helped build the device based on a computer-generated model and body scan of the girls, said she knew she had done something right when she saw the girls sleeping in the swing.
“I was really very, very happy,” she said. “I was happy they were comfortable enough to sleep in this device, which is very foreign to them.”
McCormick, who was initially brought on to help the girl’s with their club feet, said the entire experience has been “truly amazing.”
“It’s just been a neat process to watch it (the swing) evolve over time and how things have changed and what we’ve had to do,” he said.
Pitlik and McGinnis agreed and said they both stepped out of their comfort zones to do what was best for Knatalye and Adeline.
“We’re all here for them and we all love them,” Pitlik said. “We have that end in mind.”
Knatalye and Adeline were born April 11 at Texas Children’s Pavilion for Women. Delivered via Caesarean-section at 31 weeks gestation, the twins each weighed 3 pounds, 7 ounces.
The girls’ parents, Elysse and John Mata, and their 5-year-old brother, Azariah, learned during a routine ultrasound on January 13 that Elysse was carrying twins and they were conjoined. Subsequently, the family was referred from a physician in Lubbock, their hometown, to the Texas Children’s Fetal Center where they underwent extensive prenatal imaging, multidisciplinary consultation and development of plans to achieve a safe delivery and postnatal care.
Now 9 months old, the babies are doing well as they continue to be cared for by a team of specialists in the Level IV Neonatal Intensive Care Unit at Texas Children’s Hospital.