Transcription:

Melanie Cole: Welcome to the show. Our topic today is spina bifida and my guest is Dr. Haluk Altiok. He’s an orthopedic surgeon and the director of the spina bifida clinic at Shriners Hospital for Children Chicago. Welcome to the show. What is spina bifida? People have heard this name and they're not really sure what it is.

Dr. Haluk Altiok, MD: Spina bifida is a term that describes a variety of congenital malformations that is categorized with a defect in the spine that allows the nerve tissue to come out. Therefore, these kids, when they're born, they're usually born with a sac on their back. They have a great variety of problems. It starts with obviously a problem with the nerves being out, it allows their muscles to get weak and most of these kids have what we call an increased build up pressure in their brain called hydrocephalus. It needs to be addressed. That’s very crucial for them to survive, and once they survive, we then deal with these patients and see them in our clinics. It’s a term that describes a physical lack of closure in the back spine.

Melanie: Is it something that’s diagnosed while the woman is pregnant or is it usually spotted after the baby is born?

Dr. Altiok: You can actually spot before the baby is born. A lot of tests can actually point to that direction. Ultrasound can be done. Amniocentesis can be done. It’s a procedure that you actually collect the sample of fluid. There's a lot of different methods that actually allows you to diagnose this before the baby is born.

Melanie: Tell us what you do at Shriners Hospital for Children in the spina bifida clinic. When you get a patient and you get a family in there, how do you work with them?

Dr. Altiok: We do have a weekly multidisciplinary clinic. That clinic brings different surgeons together. I am one of them as an orthopedic surgeon. We have a neurosurgeon, we have a urologist, we have a rehab physician and we have physical therapy and occupational therapy. We try to create an environment that these patients, when they come in, they will be taken care of under one roof in one day and we try to address their problems. There are numerous issues with these kids. The basics are, as I said as an orthopedic surgeon, we look at their extremities, we make sure they have appropriate they appropriate range of motion, we provide them braces to support and also to facilitate their walking potential, our neurosurgeon looks into that problem with shunts and we try to address if there are any shunt problems, our urologist helps them to make sure their bladder and bowel functions are fine and these kids do not have any kidney or other problems in the future. It's a clinic that runs from morning to noon. We tend to schedule about 10 patients so we can actually spare a lot of time and give our most attention to these patients. In the end, if there are patients that we feel they can be benefitted from further studies, we also participate them in our gait studies. It's a multidisciplinary clinic, it's weekly and we try to do our best to provide the best care to these children.  

Melanie: Tell us about some of the amazing moments that you’ve had with children with spina bifida when they’ve been using assistive braces and they’re becoming toddlers and they're walking for the first time a little bit older. Tell us what that’s like.

Dr. Altiok: It's an amazing testament to a human being how we can be so resilient. For the family, it's a joy. I don't think there are any other words to describe it because as parents we always like to see our kids walk and that's a moment that I actually cherish and I think we share with the families at the same time. We also have moments to see our patients grow up and become an adult and then become a successful individual as they go on their journey. There are many moments for me to actually see these and be happy to see the joy on their family’s faces and also for our patients to succeed in their lives.

Melanie: Tell us about children with spina bifida as they grow and they become teens and some of the social aspects. Your clinic is very multidisciplinary, so as we talk about the things that these children are going to go through as they grow, what are some of the things that you've seen and what do parents ask you about that time in their lives?

Dr. Altiok: That's a good question. The needs are different the first 10 years of their life, pretty much us as the professionals and also the family focus on their well-being, we focus on their ability to walk. As they get older, as they become more social, obviously there is some psychological impact of not being able to walk or being in a wheelchair. We try to make sure that our patients feel no different than any other kids. We make sure that they become an independent individual as they get older. In order to ensure that, we do our best in a sense that we provide them the utmost care and we also have a service here that we can communicate to our psychologist. We have summer camps, we bring them in to make them a field that they can do if they want. They can accomplish many different things in life as any other normal kid. We do have camps, we have a service that we actually talk to them as they get older through the pubertal stage as they become a young adult, we try to address their issues to the best we can and we try to make sure that they become an independent individual as they get older.

Melanie: You have an onsite pediatric rehab for patients with that goal of helping them to be healthy and active in their lives. Speak about the pediatric rehabilitation center.

Dr. Altiok: We have a great rehab center as you said. We have a rehabilitation physician that oversees a number of physical therapists and occupational therapists. Our Shriners Hospital has about  beds that we can actually assign to either surgical patients or rehab patients. At a given time, we invite these patients to come in to stay for about a week or two based on their needs. Our occupational therapists see if they need any adaptive devices, if they need to be trained to tap themselves, to empty their bladders, to make sure that they become independent as they get older. Our physical therapy department has numerous devices that we can actually use to facilitate and train these patients to take better steps and become more efficient as they walk. It’s quite the complex rehab center. As I said, summer camps are incorporated into this to the idea that these individual patients can go out and participate in sports, day to day activities, become independent, can cook and can live in an apartment. These are great times for these patients to become independent as they get older.

Melanie: Where do you see the future going for spina bifida research and treatments? Do you have a little blueprint for us?

Dr. Altiok: Things started to change around the 1980s. There was a ground-breaking study which found that folic acid is extremely important to be taken to prevent the incidence of spina bifida. We also know that there is a possibility to repair the defect before the baby is born. It's called intrauterine repair. This can be done around 24 weeks of gestation. That provides a very significant future hope and prospect for these patients. Those patients who've undergone these surgeries, they tend to have fewer shunt problems and less central nervous problems. In the future, more than likely, we will look into this and we will see the incorporation of the stem cells and we will also see certain changes in the way we approach and enclose these defects to preserve as much function as we can. I do believe the future will bring many different challenges and also good things for these patients to become better individuals and more functional. I am hopeful about the future.

Melanie: Thank you so much for being with us today. This is Pediatric Specialty Care Spotlight with Shriners Hospital for Children Chicago. For more information, please visit shrinerschicago.org. That’s shrinerschicago.org. This is Melanie Cole. Thanks so much for listening.