With an Assist From NASS, Uzbekistani Child is Poised for Life-Changing Surgery
By Jeff Karzen
It all started with a NASS member email that caught the eye of Shahbaaz Sabri, an orthopedic surgeon in Virginia. The email included a note about a young girl in Uzbekistan with severe scoliosis, who needed a complex, life-altering surgery that was not available in her country.
Sabri forwarded the email to his friend, Terry Ishmael, a pediatric orthopedic surgeon at Shriners Children’s Philadelphia, and asked if Ishmael was interested in possibly taking the case.
“He sent it to me and I said, ‘Yeah, sure,’” Ishmael recalled.
That got the ball rolling.
Ishmael was then connected with longtime NASS member Keith Wilkey, who helped Ishmael reach the family of Odina Hasanovna Abdukadirova, the 12-year-old girl in Uzbekistan who suffers from a type of neuromuscular scoliosis caused by spina bifida.
“With NASS’ gracious support, Gene and I had the luxury of vetting over 25 serious international offers of assistance for Odina,” said Wilkey, who helped facilitate matters with Odina’s uncle, Eugene Vyman, a Chicago anesthetist.
They selected Ishmael, whose experience, plus his affiliation with Shriners, made him a natural fit for the complex surgery. Shriners has an International Patient Program that allows families to apply online. The application is vetted by an international team to see if the patient fits the criteria for what Shriners physicians provide. From there, an accepted patient is referred to one of several Shriners hospitals around the country.
Odina’s family had a telehealth visit with Dr. Ishmael and uploaded medical records for the doctor to assess. Shriners uses web-based software with interpreters for every language, so there is no concern of a language barrier when diagnosing a patient.
Terry Ishmael, MD Shriners Children's Hospital Philadelphia, PA
Keith Wilkey, MD Dayton, OH
Odina and her family are waiting on US visas to travel to Philadelphia for surgery. It is unknown when the visas will be obtained, but the hope is soon. Ishmael and his team at Shriners already have a plan in place for when she arrives. Because of the size and nature of her spinal curve, Odina will first be put in traction for six weeks prior to surgery.
“We’ll put a halo on when we put her to sleep and she’ll have a halo affixed to her skull and then we do what’s called halo gravity traction, where we will progressively increase the amount of weight that we use to stretch out the spine,” Ishmael said.
“We typically go up to about 50% of her body weight. Some patients will go a little bit more if they tolerate it. Patients will be in the hospital during this time, which is typically about six weeks before we do the surgery. They get weekly X-rays to monitor the change in the curve, and they’re examined very closely every day to make sure we’re not over-stretching anything that may not tolerate it, such as the cranial nerves and spinal cord. And then while in the hospital we’ll have her seen by our nutrition services to make sure that she’s gaining appropriate weight. We’ve got recreational and child life services to help them adapt to being in our hospital for such a prolonged period of time. We also have school facilities available, in addition to all kinds of support to make sure that their protracted stay is as comfortable as possible.”
Then it will be time for a posterior spinal fusion and instrumentation with correction of her deformity. After screws are placed in her back, different techniques may be done to loosen up the spine, such as cutting some ribs, as well as removing some extra bone from between the individual vertebrae to make her a bit more flexible. At this point, Ishmael and his team will gauge how Odina is doing and decide whether to complete the surgery that day or stage it. If placing screws takes longer than expected, or if she’s losing more blood than is ideal, the team may consider bringing her back for a second procedure.
Odina Hasanovna Abdukadirova, is a 12-year-old girl in Uzbekistan who suffers from a type of neuromuscular scoliosis caused by spina bifida.
Ishmael, who is in his third year at Shriners Philadelphia, said that he is cautiously optimistic regarding the outcome of her surgery. While she does have a severe curve, the team at Shriners Children’s Philadelphia is experienced in managing such complex pathology.
Because of the curve, Odina has limited lung function. If she continues to grow and becomes more active, without surgery she would be in danger of developing thoracic insufficiency syndrome, where she’d be unable to get enough oxygen into her system to maintain her metabolism. That’s why there is urgency from Odina’s family to have surgery as soon as possible.
The expectation is that a successful, life-changing surgery awaits. Assuming everything goes well, Odina should be able to do just about anything she wants by six months postsurgery.
Whether Ishmael’s team opts for one or two surgeries following the halo gravity traction treatment, Odina’s hospital stay will be quite lengthy. After staying possibly up to two weeks after surgery, she could be at Shriners for up to three months in total.
We can all imagine what that hospital bill would look like. But guess what? Odina’s family won’t receive a single bill. They won’t owe $1. Incredibly, part of Shriners’ International Program is to cover all medical expenses.
For Ishmael, performing complex surgeries on children is his everyday job. On a human level, he feels grateful to be somewhere where patients truly come first.
“That’s the most rewarding part of this job and working where I work,” he said. “The opportunity to see complex patients, especially ones who may not be able to get this treatment in their home country, or even at other major centers around the country and around the world. And to offer them a chance of having a long, healthy life afterwards. For me, that’s the reason to be here.
“It’s amazing to work somewhere where I don’t have to worry about the cost of it. I just say this is what I want to do, and this is my plan. I’ve never had anybody tell me no you can’t do this because they don’t have insurance or they can’t pay for it.”