Transcription:
Helping Children with Cerebral Palsy

Melanie Cole (Host): Thousands of children are diagnosed each year with cerebral palsy. What treatments can help improve the quality of life for these children? My guest is Dr. Mark Romness. He's a Pediatric Orthopedic Surgeon at UVA Children's Hospital. Welcome to the show, Dr. Romness. Describe a little bit about what cerebral palsy is and how common it is these days.

Dr. Mark Romness (Guest): Cerebral palsy or CP, as we often call it, is actually a group of conditions, sometimes called an umbrella term. It's where there's abnormal development of movement and posture, type of activities, and that causes limitations in their activity. About two to three children out of every thousand born have cerebral palsy, and about 10,000 babies are born each year that will develop cerebral palsy. There are different types of cerebral palsy and sort of a spectrum involvement. The most common type is what's called spastic cerebral palsy, where the child has muscle spasticity or tightness, most commonly of the extremities, sometimes, the trunk. The spectrum itself is very broad—very mild involvement and very few limitations to much more severe involvement and extensive involvement, where the child requires full assistance for all activities.

Melanie: Now, what about risk factors during pregnancy? Is there anything that you can do, and is this something that's spotted on ultrasound or amnio early?

Dr. Romness: Not usually. It is caused by an injury to the developing fetal or infant brain, so there is something related to the brain injury itself that can occur intrauterine, but there's no specific known causes during pregnancy that can be addressed.

Melanie: Women worry about things like this. Is it something you'll know right when you have that baby? Is it something that you can diagnose, Dr. Romness, pretty much right after the baby is born, or is it something that you start to see with developmental and motor delays?

Dr. Romness: It's not usually completely obvious at birth because it takes some time for the brain and the child and the peripheral nerves to develop before you actually start to see lack of development. That's usually how the diagnosis is made.

Melanie: Okay. So once you start to notice these sorts of things -- and I imagine, for parents, it's pretty scary. So, Dr. Romness, explain a little bit about the progression of this disease, of this condition or set of conditions. Really, starting from the very early age of diagnosis, even six months to a year old, what are parents doing? What are doctors such as yourself doing and even working with early intervention in their school systems? Take us right through.

Dr. Romness: Right. First, the entry to the brain itself is considered permanent but non-progressive, meaning that the brain injury doesn't get worse. But the symptoms that you see in the child can be progressive with time, especially during growth. So they will start to develop problems as they get older. That's why it is a progressive condition, but the injury to the brain is not necessarily progressive. What's done is you sort of monitor those things initially as diagnosis, and again, they are developing ways to diagnose it at earlier ages. People have been coming up with different ways of assessing that and finding things in children that suggest that the child will develop more issues down the road. Your other question was related to treatment something?

Melanie: Treatment plan. As you map out a treatment plan and the parents are thinking long-term of what they're going to do for this child as they grow and what -- physical therapy, occupational therapy, speech and language, how does that all tie together?

Dr. Romness: As you mentioned, it does start early. Really, as soon as diagnosis is made, it's been found that intervention with therapies and treatments like that are helpful. In most of the states, they even have what's called an early intervention program, or it's also sometimes a birth to three where they will evaluate the child, and it'll determine which therapies will be best for the child to keep them progressing and get them going. From a medical standpoint, most of the treatments are individualized, because each kid has a unique pattern that there's no standard protocol for treatment. But the treatments tend to be individualized specifically for that patient. Most common treatments used, like you mentioned, are physical, occupational, and speech therapy. Other things we tend to use are [bracing], or sometimes called orthotics or orthoses, and those are used to help position the limb. Sometimes, as they get older, we'll get into equipment issues such as walkers, crutches, wheelchairs, and then there's also some medications to help with some of the conditions, like the spasticity. There are some medications available to try and treat spasticity. Then, surgically, which I'm involved with as an orthopedic surgeon, tends to deal with things like joints and fractures, foot position, hip issues, spine and scoliosis.

Melanie: Okay. So these types of surgeries that you would be involved in, what are they intended to do?

Dr. Romness: The main goal is probably function. You're trying to maximize their function, both short-term and long-term. Surgeries are usually sort of restoring or repositioning the hip, the leg into a more functional position.

Melanie: Now, does that stay? Is that permanent? If you do that and you restore that hip into a more functional position, is that something that then will -- the muscles will get lax again and retreat back to where it was, or is this something that would last for the child's life?

Dr. Romness: Again, it's somewhat age-dependent. There are some surgeries that are better done at a young age, and then they will help the child down the road. But there are some procedures that we actually wait until the child is a little bit older because if we do it at a young age, the recurrence is pretty high. So some of the bone procedures where we turn the bone or correct the foot position, we found that it's better to wait until they're older and it's less likely that they're going to need another surgery for that.

Melanie: Now, how is UVA equipped? How are you helping children with cerebral palsy? In your department, Dr. Romness, braces and things, working with all of that, what are you doing there?

Dr. Romness: As part of the Department of Orthopedics, we do have these orthotics and prosthetics, which is the brace place, and so they're involved with us in terms of a lot of bracing issues. My approach is what we call family-focused approach. We don't just look at the child. We look at the child in their family setting because we find that all that works together. What I do is I kind of assess each child for the unique aspects, determine what I can do to help them now, things that I need to worry about for the future, and then I sort of say, "What I can do to prevent future problems and keep them going?" I then determine which treatment is best, both for now and the future, and then discuss that with the family.

Melanie: In the last minute, Dr. Romness, wrap it up for us about CP and working with the families and giving the best quality of life to children with this.

Dr. Romness: Right. Like I said, this is family-focused. I will say that UVA is one of the leaders in that kind of treatment because we have such a diverse field of specialists who are not only competent but they're comfortable and excited about taking care of kids with special needs. We have the therapist, we have a dietary and feeding specialist, behavior and developmental specialist, dental, ENT, gastroenterology or GI, orthopedist, neurosurgeons, to name a few. One of our developmental pediatricians, Richard Stevenson, he was just elected President of the American Academy for Cerebral Palsy in Developmental Medicine, which is the main organization for practitioners. Probably you could say that we're at the forefront of the field with that.

Melanie: That is great. Such good news. Thank you so much, Dr. Mark Romness. You're listening to UVA Health System Radio. For more information, you can go to uvahealth.com. This is Melanie Cole. Thanks for listening.