Maylena is a typical, sassy 13-year-old teenager from Lincoln, Nebraska, who enjoys anime and telling stories with her friends. One thing about her that’s not typical, however, is that Maylena has been in and out of the hospital for numerous surgeries since birth.
When Maylena was born, she weighed only 4 pounds, 7 ounces. Her weight was not the only thing alarming – her limbs on the left side of her body were noticeably shorter. Doctors diagnosed her with Conradi-Hünermann syndrome – a rare genetic disorder characterized by skeletal malformations, skin abnormalities, cataracts and short stature. Not only has it affected the length of her limbs, she uses hearing aids and her left eye has been replaced by a prosthesis. In Maylena’s first 13 years of life, she has undergone three leg surgeries, 10 eye surgeries, a de-tethering of her spine and a number of other less complicated procedures.
At 8 months old, her doctors saw in an X-ray that she had a crooked spine. Her parents decided to take her to Shriners Hospitals for Children — Twin Cities after speaking with a number of Shriners in their family. At Shriners Hospital, Maylena saw Ken Guidera, M.D., who worked with her on correcting her scoliosis. Tim, her orthotist at the time, made Maylena the smallest body brace of his career, which he since has taken with him to share with other orthotists at pediatric care conventions.
After correcting her scoliosis, Shriners Hospital physicians focused on trying to lengthen her left leg. Traditional leg-lengthening measures using external fixators did not produce the desired results. It was time to try something different…or amputate. Knowing that Maylena did not want her leg amputated, her mother got a referral to a pediatric orthopaedic surgeon at another hospital who specializes in a new technology called magnetic limb lengthening. The procedure involves the surgical implantation of magnetically driven growing rods into the bone, eliminating the need for external fixators thereby providing less risk of infection, pain and scarring.
After waiting almost a year for their insurance company to approve the surgery, Maylena’s parents were informed that the costs of surgery would not be covered. They were running out of options.
Cary Mielke, M.D., chief of staff at Shriners Hospitals for Children — Twin Cities, learned of Maylena’s situation and took it upon himself to train and learn how to do the surgery. Dr. Mielke performed the PRECICE magnetic limb lengthening surgery for the first time on Maylena on March 29, 2017.
“What an amazing experience,” said Jennifer, Maylena’s mother. “We are forever grateful that Dr. Mielke was so dedicated to helping our daughter, that he went through specialized training on the new technology and surgical procedure that would provide her the best outcome. Now, other children will be able to have this procedure at Shriners Hospitals for Children.”
The end of the "treatment" road is still about two years away for Maylena. The initial lengthening procedure will take about 40 days with the goal of a 3 centimeter (cm) growth – 4 cm, if it’s going very well. Then, another limb lengthening and a knee correction procedure will be required before being able to reach the final goal of a 6 cm limb growth.
When Maylena was asked what she wants to do when this is all over, she excitedly said, “Disney World and travel around Europe!” She also wants to skateboard and attend anime conventions, but she’s mostly just looking forward to being able to walk normally.
“She’s the bravest person I know,” Jennifer said about her daughter, “But she’s going to have to get a job to pay for all this traveling she wants to do!”