December 23, 2019

Osteogenesis imperfecta surgery allows patient to be a kid again

Patient Stories | Pediatric Orthopedics

Jack Weitz was diagnosed with a genetic condition called osteogenesis imperfecta (OI), often referred to as ‘brittle bone disease’. OI is a genetic bone disorder where the bones are more fragile and break easily. Typically, a person is born with this disorder.

At just 5 years old, Jack had undergone eight surgeries to straighten and strengthen his bones and will likely have additional surgeries in the future. OrthoIndy pediatric surgeon, Dr. Kosmas Kayes, has performed three of the eight surgeries for Jack so far.

“Dr. Kayes sees many children in the area with Jack’s condition and is very familiar with it,” said Katie, Jack’s mother. “Our first visit was to explain Jack’s history to Dr. Kayes, as we had recently moved to Indianapolis from St. Louis. Dr. Kayes talked to us for over half an hour to get to know Jack, which we very much appreciated.” 

Jack has since seen Dr. Kayes at almost all of the OrthoIndy locations around Indianapolis, either for fractures or post-op care. Dr. Kayes was recommended to Katie by families who have OI.

“Many kids who have osteogenesis imperfecta in the area see Dr. Kayes. Since OI is a very rare condition, it’s hard to find surgeons with the knowledge and experience necessary to treat the condition,” said Katie. “Dr. Kayes has gone above and beyond to learn about OI and is familiar with the most up-to-date treatments and surgical techniques, which makes us feel very comfortable with him treating our son.”

Surgery

Jack first visited Dr. Kayes in the spring of 2017. He had a complex hip repair. “Along with OI, Jack had a deformity in his hip called coxa vara,” said Dr. Kayes. Coxa vara is a deformity of the hip, whereby the angle between the head and the shaft of the femur is reduced. 

To help reduce the chance of injury related to OI, Jack had rod replacements in his femur, tibia and humerus. “Jack needs metal rods in the center of most of his long bones to help lessen the severity of fractures when he has an injury,” said Dr. Kayes. “These rods provide support, so the fracture does not displace as much, and he has less pain since it is more stable.” 

Unfortunately, because of Jack’s condition, it is predicted that he will need additional surgeries as he grows. “Jack sees Dr. Kayes whenever he has a fracture or needs surgery, which is usually once every six to eight weeks or so,” said Katie. “He will likely see him routinely throughout his life.”

After surgery

“Jack has so much energy. He is such a smart, talkative person and such a joy to be around in the clinic,” said Dr. Kayes. 

As Jack continues to have high spirits, similar to all 5-year-olds, there really is no ‘after surgery’ for him. However, Jack doesn’t let his condition get in the way of him achieving his goals. “Jack has recently started swimming lessons and is very close to swimming independently,” said Katie. “He’s also very excited to start kindergarten!”

Katie and her family are grateful to Dr. Kayes for helping kids like Jack. “Jack’s quality of life is, without a doubt, better because of Dr. Kayes,” said Katie.

When Katie asked Jack why he likes Dr. Kayes, Jack replied, “I like Dr. Kayes because he’s nice, he makes me feel better and he brings me popsicles!”

To schedule an appointment with Dr. Kayes, please call 317.802.2491 or learn more about pediatric orthopedic care at OrthoIndy.

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Schedule an Appointment Call OrthoIndy 317.802.2000

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