Boy With 1-In-A-Million Condition Is Thriving After Parents Make Tough Decision.

As advocates for their children’s health, parents are often faced with difficult, and sometimes downright impossible, decisions.

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Dawn and Hector Miranda learned that their baby, Dakari, had a limb difference at their 20-week ultrasound. Doctors first thought the infant would be born with a club foot, but more tests revealed that his diagnosis was much more rare – and harder to treat.

Dakari was diagnosed with tibial hemimelia, a condition where a child is born with a shinbone (tibia) that is smaller, unformed, or missing. Dakari’s case was the rarest of the rare because he was missing his entire tibia. Doctors called it a one-in-a-million diagnosis.

Dawn grappled with grief for weeks, seeking solace and advice from a Facebook group with parents of children with limb differences. After doing some more research, she came to terms with her son’s condition. Her main goal was to ensure he could run, jump, and play with his older brother and friends.

“Every parent has to make the best decision for their child, but I didn’t want Dakari to sit out on life,” Dawn said. “If I wanted my son to kick for the Chicago Bears someday, the best thing would be to get him a prosthetic leg.”

Dawn and Hector brought Dakari to The Chicago Institute for Fetal Health (CIFH) at Lurie Children’s and the Division of Orthopedic Surgery and Sports Medicine. His doctor, Dr. Romie Gibly, gave them two options: extensive reconstructive surgery or amputation and prosthesis.

“With no tibia at all, in addition to no knee joint or ankle joint, Dakari’s reconstructive options were very limited,” said Dr. 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.”

Once Dakari started crawling, the choice became clear for his family.

“Over that first year of life, it became really apparent pretty quickly that the foot was really just getting in his way,” the doctor said. “It just kind of flopped around and he didn’t really have any control over it, and it really prevented him from getting moving.”

When Dakari was 14 months old, he had an hours-long surgery to remove his right leg below the thighbone. His recovery went smoothly, and by the time he got his cast off he was more than ready to move! Dawn says watching his joy at being able to crawl unfettered by his leg made her confident she’d made the right decision for her son.

“When we went to get the cast off, the kid shot down the hall like a sprinter,” said Dawn. “He was on the move and it was almost like he wanted to say I appreciate it, like thank you so much.”

Experts say children who grow up with a prosthetic limb have far fewer difficulties adapting. Dr. Gilby said kids don’t have the same sense of loss that adults do, especially if they learn to walk for the first time with a prosthesis.

Not long after Dakari was fitted for his custom prosthetic limb, he took his first steps. Since then, his mom says he hasn’t stopped moving!

“Ever since he had his amputation, the kid is AMAZING,” said 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.”

As he grows, Dakari will need to have his prosthesis adjusted and may need minor surgeries. Other than that, he is not expected to face any other limitations!

Our hearts go out to Dakari’s parents for facing such a difficult decision, but we’re happy to see that they made the best one for their little boy. We can’t wait to see what Dakari accomplishes with his new prosthetic!

Share Dakari’s story to celebrate first steps, both large and small.