For many of us, the thing we’re most focused on when we go to the doctor is the diagnosis. Is it good? Is it bad? What does it mean for me and my family? This makes sense, as medical situations are innately stressful. Frequently, however, the diagnosis is just the start of a patient’s odyssey through treatments, surgeries and recovery.
That process can’t be easy, especially when the patient is just two years old just as Kaitlyn when she came to us here at the Paley Institute. Her parents had first noticed some bumps on her ribs just before her second birthday in October 2015. Like any parent, they quickly got them checked, though the diagnosis left them with more questions than answers. Speaking to different medical professionals, Kaitlyn’s family were given some different theories about what was occurring with the bumps, but never a definitive answer.
The Diagnosis: MHE
A short six months later, in April 2016, the next shoe dropped. Her parents had felt a large bump above her left ankle, a bump that was extremely hard and akin to a golf ball cut in half and attached to her leg. Knowing something wasn’t right they immediately contacted an orthopedist who did X-rays. These showed that Kaitlyn had bumps on her tibia and fibula, suggesting she might have Multiple Hereditary Exostoses (MHE), a rare disease that can be quite painful for children.
Her parents were left facing a daunting challenge: not only is MHE quite rare, but the number of doctors with experience and holistic treatment plans to help patients deal with the disease is also small. After a number of unsuccessful visits with doctors who had some experience with MHE, they decided on a whim to fly to Florida and visit Dr. Feldman here at the Paley Institute. As her parents said, “it just felt so right,” when they arrived and met with Dr. Feldman and the team here.
“Each patient was given the time and attention they needed to ensure all of their needs were met,” her parents said. “You are not rushed through your appointments.”
After that initial visit, Dr. Feldman and Kaitlyn’s parents agreed on a treatment plan to combat the disease that threatened to take away her childhood. Kaitlyn would need to have an intensive surgery that would require her to avoid walking for 4-6 week and then start on the road to recovery. After the surgery in November 2016, Kaitlyn was left with a full leg cast on her right leg and a boot on her left foot. Despite these challenges, her parents said, her physical therapist at the Paley Institute worked with her to get her back on her feet within three weeks of her operations!
“We cannot be more thankful to the time, attention and compassion all of the staff at the Paley Institute and their surgical center showed our family,” they said.