Balancing a One-in-a-Million Diagnosis: Dakari’s Prosthesis Journey
“I wanted to give him the best chance possible,” Dawn recalls, a mom who was faced with the impossible decision to either put her son Dakari through the uncertainty of complex reconstructive surgery or have his leg amputated. She was brought to this crossroad after questions about Dakari’s development arose at her 20-week ultrasound. Originally, doctors suspected Dakari would be born with clubfoot (a foot abnormality in which the foot is twisted out of position) based on what they were seeing on the scans. That’s when Dawn and her husband, Hector, sought the expertise of The Chicago Institute for Fetal Health (CIFH) at Lurie Children’s and the Division of Orthopedic Surgery and Sports Medicine. After meeting with the Lurie Children’s team, they learned that their baby boy was up against something much more complex.
Romie Gibly, MD, PhD, Attending Physician, Division of Orthopedic Surgery and Sports Medicine, in partnership with CIFH, eventually gave the Miranda family Dakari’s true diagnosis: tibial hemimelia, a one-in-one-million condition where a child is born with a tibia (shinbone) that is smaller, incompletely formed, or missing altogether. Dawn recalls Dr. Gibly doing his due diligence and weighing all possibilities before declaring the diagnosis as final.
“These congenital limb deficiencies can be difficult to accurately diagnose prenatally with ultrasound and many families are then surprised by the diagnosis after the baby is born,” said Dr. Gibly. “In Dakari’s case, we had a pretty good sense of his diagnosis and could start discussing options before he was even born.”
It was ultimately determined that Dakari was one in a million. The tibia in his right leg was completely absent.
Weighing a difficult decision
When Dr. Gibly presented the potential care options to Dawn – reconstructive surgery or amputation – she remembers feeling distraught and unsure of what would be best for her son. After learning more about the physical burden reconstructive surgery could cause, and what it might mean for Dakari’s ability to participate in everyday activities like sports and playing with his older siblings, the decision became clear.
“With no tibia at all, in addition to no knee joint or ankle joint, Dakari’s reconstructive options were very limited,” said Gibly. “Even in the best circumstances, reconstruction would result in a short, fragile, and stiff leg – one that would always need a brace and function more like a post to lean on than a leg he could run on. Even to achieve this, he would likely require numerous surgeries throughout childhood, many of them with high risk of complications and most requiring months of extensive rehabilitation afterwards.”
Contrastingly, Dr. Gibly says small children who undergo amputation don’t deal with the same feeling of loss that adults do, as it’s usually a single, low-risk surgery and short recovery time. He notes that since kids learn to walk for the first time with a prothesis, they don’t have to “adapt” to it, it’s just all they have ever known.
“Every parent has to make the best decision for their child, but I didn’t want Dakari to sit out on life,” Dawn said. And she was dreaming big for his life from the very beginning. “If I wanted my son to kick for the Chicago Bears someday, the best thing would be to get him a prosthetic leg.”
In watching Dakari grow his first few months, Dawn was excited to see him on track and meeting all his milestones, but there came a point where the bottom of his right leg (the affected leg) started getting in his way. As he began to crawl and become more mobile, she noticed he didn’t have much control over it, and it was more of an interference for him to drag it around. “That’s the moment I realized it was time for him to get his amputation,” she says.
Dr. Gibly performed Dakari’s amputation in December 2021, and despite the natural worry and concern the Mirandas felt during the procedure, the result was more rewarding than they could have imagined.
A resilient recovery
“Ever since he had his amputation, the kid is AMAZING,” says Dawn. “He’s going up the stairs, crawling all around, dancing, and he and his brother are two peas in a pod now. Dakari follows him everywhere – it’s the best thing I could have done for him in his little life.”
Dawn is especially grateful to Dr. Gibly for recognizing that Dakari would likely be an active child and customizing his amputation in such a way where he could leverage his right leg to his advantage.
Adjusting to life as an amputee at such a young age came surprisingly easy to Dakari. In addition to Dr. Gibly’s surgical expertise, Mom credits Dakari’s energetic, intelligent, and joyful personality for the way he was able to transition seemingly effortlessly.
“He lets nothing stop him,” mom says. “Once the cast came off, he shot across the room like a star.”
Taking life in stride
Dakari’s resilience was reassuring for his parents to see early on, as they knew this was just the beginning of a longer process and a life that would likely test him. A few months post-amputation, the time came to fit and trial his custom prosthesis with Lurie Children’s Pediatric Orthotics and Prosthetics Program.
Lurie Children’s has one of the largest teams of highly skilled orthotists and prosthetists in a freestanding children’s hospital in the Midwest. Pediatric prosthetics is an extremely niche specialty within the field, and a dedicated team onsite with a personal laboratory to create customized, state-of-the-art orthoses and prostheses, is rare. Breanna Baltrusch, CPO, LPO, oversaw Dakari’s case from fittings to first steps.
“At Dakari’s initial evaluation, we assessed his limb, activity level, mobility and discussed family goals,” Baltrusch says. “From there, Dakari was seen for several appointments to fabricate his test prosthesis. We start by taking measurements and a plaster cast of his residual limb to obtain the shape. This cast is then filled with plaster to obtain a positive model of his limb. Following a few modifications, the plastic is then heat molded over the model to obtain what we call a test socket. Dakari then trialed the socket over a couple of appointments so we could ensure proper fit, comfort and alignment of the prosthesis. Once we determined the appropriate fit, we were able to make a more definitive and durable prosthesis that he could take home as his own.”
In June Dakari received his custom prothesis, and his family and care team cheered him on enthusiastically as he took his first steps – on two feet – into a new stage of life his mom is sure he will thrive in. While he’s still in the infantile phase of the process, Dakari is responding well, but continues to get familiar with his prothesis and find his comfort level.
Breanna says Dakari’s prosthesis will require routine follow up visits to accommodate for growth in his younger years. As he gets older, it will most likely last for two or more years. “Given that Dakari is starting this process at such a young age, I have no doubt he is going to be an incredible prosthetic user,” said Baltrusch.
As Dakari learns how to move through life with his new leg, his mom reflects on the incredible resilience he’s shown in just 20 months. Born at 4 lbs. 5 oz, Dakari was a tiny bundle when he joined the Miranda family, but now has the opportunity to take on a big future.
“He’s a little superhero. He’s taught me so much,” Dawn says. “If he can do it, anyone can.”