SivaTeja Pati’s newest creation is the result of a collaboration between the Texas Tech University Libraries, Honors College, College of Arts & Sciences and 3D Prints for Patients.
Audrey Dominguez remembers the day her son came home, shortly after beginning his fifth-grade year at Smyer Elementary, and announced that his band teacher had assigned him the trombone.
She sighed, knowing that for 10-year-old Malakai Johnson, who was born without most of his right hand, any instrument was going to be nearly impossible to play.
While researching alternative instruments that might work for Malakai, she happened across an article about SivaTeja Pati, a Texas Tech University student who had 3D-printed a prosthetic hand for 8-year-old Toby Carrizales just a few months earlier. On a whim, she reached out to Pati.
"It was a long shot, but it was one I just had to take," Dominguez said.
Five months later, Malakai has become the second child to receive one of Pati's prosthetic creations. After spending the first decade of his life with only one hand, Malakai is looking forward to a future with two.
The beginning
On April 10, 2008, Dominguez was an average, young, working mom. After getting her bachelor's degree in education from Texas Tech several years earlier, she was teaching kindergarten and third grade in Hereford. She had two daughters, 5-year-old Meiah and 3-year-old Faith, and was expecting her third child any day. Her own birthday was in five days.
On April 11, 2008, though, her life changed forever with the birth of her only son, Malakai. Expecting a healthy baby like her daughters had been, Dominguez was distraught when doctors instead told her the boy had severe birth defects.
"When he was born, they said that he would never walk, talk or crawl," she remembers. "They actually told us he would probably pass away in the first day or two.
"It was terrible. For the longest time, they didn't actually know what was wrong with him. We chased specialists all over the States – every state you can imagine, we've been to."
Eventually, Malakai was diagnosed with two incredibly rare conditions, Poland syndrome and Moebius syndrome, as well as Bell's palsy and dextrocardia. What that means, functionally speaking, is that in addition to missing most of his right hand, Malakai is missing most of the right side of his body, his right arm is underdeveloped, he's blind in his left eye and near-sighted in his right, he has substantial hearing loss and damage to six major nerves.
"All the conditions he has, he was born with," Dominguez said. "The doctors tell us it was just a genetic fluke – a one-in-a-million thing. With Poland syndrome, most children are born with their left hand missing. With the way Malakai's heart is, if it had been his left hand, he would have died at birth. It definitely could have been worse."
Even counting their blessings, however, for Malakai – a football and wrestling fan who Dominguez describes as "all boy, all the time" – it's not an easy life.
"As far as health, seeing as how on his right side, he just has his ribs and his skin, he has to be careful to never get hit," she explained. "If he were to play a contact sport or roughhouse, that could kill him. He does not have the casing around his heart like we would normally have, so we must continually monitor – at least once a year, for sure – to make sure everything's good.
"As far as mobility, he doesn't have a hand on that side so he doesn't have the ability to do things normal kids would do: playing ball, riding a bike, picking up a pencil."
'Messenger of God'
It's also not an easy life for Dominguez, a single mom to her now 15-, 13- and 10-year-olds who works two jobs: a full-time position at Hobby Lobby during the day and an overnight position at Dollar Tree.
"We are real big on faith; we believe in the power of prayer," she said. "And I'm very, very blessed to have a job that's very understanding, so that's nice."
She credits her church family at The Worship Center for keeping her sane because, she admits, she doesn't have many other outlets for her feelings.
"I'm very lucky because I can go there, and I can be surrounded by people who genuinely care," Dominguez said. "I have people who will call and check on me and make sure I'm OK. That's it, really. I don't have much time with everything else.
"Sleep's not really in my calendar right now."
Nor was it when Malakai was a baby. At just a year old, he died for the first time.
"Malakai has actually passed away a couple times," Dominguez said. "He passed away when he was a year old, getting an MRI, and that's when they discovered the nerve damage in his brain. Then, he passed away again a couple months later in my arms in the waiting room of his pediatrician.
"When he was little, his brain would forget to tell him to keep breathing, so what we found was that when he fell asleep, he would pass away, so he had to have surgery, of course."
Dominguez said she named her son Malakai intending for his nickname to be "Kai" – which no one calls him, she laughed – but his health struggles have helped her see his name in a new light.
"It means 'Messenger of God' in the Bible," she explained. "Up until he was 8, he would tell us stories about angels or ghosts he could see."
Prosthetics
Dominguez said even considering all the issues Malakai has to deal with, she feels fortunate when she considers how much worse it could be.
"I'm a parent; I'm always going to struggle because I can't help my kid," she admitted. "But when I take him into physical therapy, and I go in and see these kids who are way worse than he is, I feel guilty. Why am I complaining? I don't have room to be. I'm very, very blessed."
While she tries to stay optimistic, focusing on Malakai's improvements rather than the uncertainty of his future, the latter fact is always there.
"We go to doctors all the time," she said. "It's constantly something new coming up with him; he's been having seizures, and they can't figure out what brings it on. It just seems like there's always something new.
"Poland syndrome is very, very rare, and so is Moebius, and he's got both of them. With Poland syndrome, they don't actually know the outcome, so little things for normal people are big things for him. That keeps me busy."
Because of Malakai's struggles as a child, particularly in terms of his physical limitations, Dominguez began looking for options to help him live as normally as possible.
"I've been trying to get him a prosthetic since he was little, but a prosthetic for him, with the fingers he needs, is $100,000," she said. "Insurance believes it's a cosmetic procedure and there's no need for it, so no matter how many times we tried to fight it, they wouldn't do anything for us. I always just kind of folded with it because that's the only choice we had."
Dominguez even looked into prosthetics options through Shriners Hospitals for Children and Cook Children's Hospital, but they could have made Malakai only a plastic hand, not a truly functional artificial limb. The waiting lists for those were years long.
"We were trying to get a robotic hand for him," Dominguez said. "I think three times we've tried, and one time we actually thought we were going to be able to proceed with that, and then we got a rejection letter from insurance. So we fought it. We thought we were going to get it and then we were denied.
"Every time he gets denied, the letter comes back saying that his conditions aren't permanent. I'm not proud of it, but I actually got into an argument with the lady at the insurance office about it. I told her, 'If his hand grows back, you can keep the prosthetic.'"
New hand
So when she spoke with Pati for the first time and he assured her he could create a specially designed 3D-printed hand for Malakai that would give him the functionality he's never experienced, she was cautiously optimistic.
"I was a little nervous that it was not going to work out, just because we'd had our hopes up before and been let down," she said. "But he's so excited."
After beginning the process in September, Dominguez and Malakai met with Pati in October for initial measurements and 3D scans in the University Library's Makerspace. Malakai got to choose his design theme and colors, but when he announced he wanted a "Flash" hand, complete with lightning bolts, his mother was a little surprised.
"I would have thought he would have gone with maybe Captain America or Superman," she said, "but the day we met Teja, he had a Flash hat on. I think Malakai was just so excited that Teja took an interest, and that had a lot to do with it."
Of course, the red and gold colors Malakai chose for his Flash-themed hand also match another of his interests: the Kansas City Chiefs.
"He's a big Patrick Mahomes fan," Dominguez laughed, referring to one of Texas Tech's most famous alumni. After only one season in the National Football League, Mahomes became the Chiefs' starting quarterback for the 2018 season and ended up as both the Offensive Player of the Year and the NFL's Most Valuable Player.
After scanning Malakai's hand, Pati was able to print a 3D model of it. He then 3D printed the prosthetic finger segments – each taking 20 minutes to an hour – and the palm, which took several hours. Using fishing line, he fitted the segments together into fingers and attached the fingers to the palm, sculpting the prosthesis around the model hand so Malakai didn't need to come in for fittings every time Pati made changes. After a few design alterations along the way, Pati presented his finalized creation to Malakai in late January.
Still getting used to the movement, Malakai curled his hand toward his arm to contract the plastic fingers, his brow furrowed in concentration as he carefully picked up a ball, a toy airplane and even the model of his own hand.
"It means a lot to both of us," Dominguez said with tears in her eyes. "Malakai's perfect the way he is, but it's nice to have a little bit of normalcy for him, to be able to do things like other kids do: play ball and pick things up and put his own clothes and shoes on.
"He loves sports, and he's ready for basketball because now he can two-hand dribble."
Whereas Toby's hand was built as an academic research project so Pati could use the Library Makerspace for free, Malakai's hand is part of a new collaboration between the Texas Tech Libraries, the Honors College, the College of Arts & Sciences and 3D Prints for Patients, the new nonprofit Pati has started to continue the work past his graduation.
"We want to be able to help children as they hit growth spurts, to provide a low-cost prosthetic so they can grow and have a device they can continuously use throughout their life," he said.
The prosthetics are designed slightly larger than the child's current size to allow for growing room, generally nine months to a year's worth. Part of Pati's goal is to be able to keep providing updated prosthetics to all his previous clients as they continue to grow.
"Toby is coming up on getting a new hand," Pati said, "so we'll see him again pretty soon."
In some ways, Pati said, presenting Malakai's hand reminded him of the same event with Toby eight months ago. But he's quick to add that the moment with Malakai carved its own indelible place in Pati's memory.
"It always gets you; the smile on his face put a smile on my face," Pati said. "It's amazing to see a child be able to pick something up with a hand he was unable to use previously. That moment will always make an impact on me."
