Mario Armendariz Ortega: Amputation Doesn’t Set Brother Apart
May 2019 Issue
At first glance, most people will have a nearly impossible time telling identical seven-year-old twins Mario and Devin Armendariz Ortega apart. They are typical twins, the same as much as they are different; they dress the same, use the collective ‘we,' and aren't too happy when you mix up who's who.
On this cloudy spring day, however, it is easy to tell Mario from his brother. The boys are wearing matching tops and shorts—and it is easy to see the prosthesis that runs the length of Mario's right leg.
Mario was born one minute before Devin on December 13, 2011. It was a difficult pregnancy for their mother, Karina Ortega, who was 18 years old when she gave birth. Ortega was about 22 weeks into her pregnancy when she learned that there was too much amniotic fluid in one of the twins' sac. Her obstetrician told her she had twin to twin transfusion syndrome (TTTS). Of the five stages of TTTS, Ortega was at the fourth stage, in which the imbalance of blood had started to cause heart failure in both boys. Ortega, who lives in Fort Collins, Colorado, flew to Seattle for surgery.
Surgeons used a laser to stop the blood flow between the twins, effectively separating the placenta to allow each twin to develop independently. For the duration of Ortega's pregnancy, she had weekly physician's appointments and frequent ultrasounds. Ortega and her husband, Mario Armendariz, were told to expect that one of their sons would have a cleft foot.
By late November, Ortega learned she again was experiencing TTTS. When her water broke in December, Ortega says she could no longer feel the twins moving. An ultrasound showed she had little amniotic fluid remaining. "I told them I need to have these kids already," Ortega remembers. She says they were all shocked when Mario was born and did not have a cleft foot as they had anticipated. "We had no idea because that's not what the doctors told us to expect," she says. "His toes had formed, but it was like his leg had dried up." The twins were born at 33 weeks and four days. Mario weighed two pounds, Devin, four pounds, two ounces. Within 24 hours, Mario underwent transfemoral amputation surgery.
An Early Start
Ortega says her son's orthopedic surgeon and physical therapist referred them to Prosthetic & Orthotic Group of Northern Colorado, Fort Collins. They have worked with Kevin Burton, CPO, since August 2012. Aside from the challenges of treating an active little boy, it is Mario's short residual limb that poses the greatest challenge, Burton says. "Due to his youth and very short residual limb, many adjustments were required," he says. "It was trial and error when figuring out the optimal suspension, and he was also growing very quickly."
Mario was ten months old when he received his first of the six prostheses he's used, with a pylon and SACH foot, which did not include a knee, Burton says. Since Mario began wearing a prosthesis, he has been using the same type of suspension system, and by the time he was three and a half, he had transitioned to a locking knee, Burton says. A year later, Mario was fitted with a Total Knee and a Vari-Flex dynamic foot, Össur, Reykjavik, Iceland.
With his first prosthesis, Mario used a walker and soon transitioned to custom canes that his physical therapist and Burton designed. "When he was first fitted, he'd get very frustrated, as it slowed him down," Burton says. "He had trouble playing on the floor and was much more mobile without a prosthesis. He eventually figured out, though, that it was beneficial for him to wear it, especially when he started preschool and was in the presence of other kids."
In the beginning he did not like the device, his mother says. Mario also says the first experience he remembers with his prosthesis was "horrible." "I just didn't like it at all," he says.
Mario has a flexible socket and silicone liner and lanyard suspension with an auxiliary belt to aid suspension, says Burton. He currently wears a prosthesis with an Ottobock hydraulic knee (3R67), which Burton points out is designed for pediatric users to provide a smooth, quiet gait. When Mario outgrew his Vari-Flex foot, Burton replaced it with the College Park Truper foot.
Burton estimates that Mario has had his current combination for about six months.
"He did well with the Total Knee, but it wore out quickly and was very noisy and clunky," he says. "We also learned that carbon and playgrounds do not mix." The blades on his Vari-Flex foot became thin and would wear through the footshell quickly, Burton says. The new foot provides a multiaxial component and allows him to walk and play while maintaining stability, and the knee is smooth and provides a quiet, natural gait pattern, Burton says.
Burton says in the years he has treated Mario, Devin treats his brother like any other sibling. "Devin doesn't seem to see him as disabled and doesn't treat him differently," he says. "They both participate in the same activities and enjoy many sports." Mario's love of sports is also something that continues to remain a challenge for Burton. "Many times, Mario has broken components or comes in with the foot falling off and everything twisted backwards," he says.
Ortega and her husband wanted to have more children, and although Ortega's physicians told her there was a possibility of multiple births and a risk of TTTS, they decided to try one more time. They have another son, Julian, who was born three years ago without complications.
Ortega says now that Mario is older, he is thankful that he has adjusted to his prosthesis. "Now he's just like any other kid," she says. "He can keep up with other kids; he plays soccer and baseball and wants to try football and other sports."
When Mario is not wearing his prosthesis, he says, "I just hop around the house on one leg."
Her boys will be boys, Ortega says. "Both are very active, crazy seven-year-olds. They fight sometimes, but they get over it," Ortega says of her sons, who both want to be police officers when they grow up.
When Mario and Devin were younger, Ortega says both would ask her what happened to Mario. "I would tell them that's how I asked God to send him and that I wanted him to be the way he is. After a million more of those questions, they both just let it go and it's normal to them now. I always like to tell people that I went through hell and back to have them, but I am glad it happened the way it did. I love my kids, and I am thankful God sent them the way he sent them; it made me mature so much faster, and I look at the world in a different way now. They are my miracle babies."
Betta Ferrendelli can be contacted at firstname.lastname@example.org.