Transcription:
Targeted Treatments and Outcomes for Spina Bifida Patients

Scott Webb (Host): This is Pediatric Insights, Advances and Innovations with Children's Health, where we explore the latest in pediatric care and research. Today we're discussing targeted treatments and outcomes for spina bifida patients. And our experts today are Dr. Bradley Weprin, Division Director of Neurosurgery and Director of Neuro-Oncology at Children's Health and Professor at UT Southwestern and Dr. Micah Jacobs, Pediatric Urologist at Children's Health and Associate Professor at UT Southwestern.

So, Doctors, I want to thank you both for your time. This is an interesting topic. And I'm going to start with you, Dr. Weprin. Give us an overview of what spina bifida is.

Bradley Weprin, MD (Guest): Spina bifida is an extremely broad term. It refers primarily to a group of congenital, meaning, something you're born with, disorders that affect the lower part of the spinal cord. Some would call the main nerve. And there are multiple different types or forms of spina bifida ranging from something termed myelomeningocele in which the lower part of the spinal cord does not form completely and the individual is born with a portion of their spinal cord on the outside. These individuals have additional issues that can also affect the brain and other organs. Now, other types of spina bifida affect only the lower part of the spinal cord and the nerves associated with such. All types of spina bifida share issues and problems that affect the lower part of the spinal cord. And that's the part of the spinal cord that controls or is responsible for functions of the muscles of the legs and feet and also the muscles that controls one's bladder and rectum. Individuals with spina bifida can have lifelong issues that affect orthopedic, neurologic and urologic or bladder function.

Host: Yeah, and that's a good baseline, a good starting point for us here and Dr. Jacobs, at what point do the urology and neurosurgery teams at Children's Health join to provide multidisciplinary care for patients with spina bifida?

Micah Jacobs, MD (Guest): I would say that really starts kind of right at the beginning and actually occasionally even prenatally, depending on how severe something might be with the bladder. As Dr. Weprin was saying, the spinal cord is critical for all kinds of things related to muscles and the bladder is basically a set of muscles, both the bladder itself and also the sphincter that controls the outflow of urine. And so, from the very beginning, if there's trouble with basically urine leaving the bladder, especially if the bladder is under a fair amount of pressure, even at birth, that can cause some concerning problems and we might have to intervene right around the time the baby's born.

Of course neurosurgery is involved right away for closure, if there needs to be a closure of the spinal cord. But urology oftentimes is brought in immediately thereafter to help manage of bladder safety. And ultimately that's because if the bladder is not safe in terms of pressures, urine can't make it down from the kidneys in a safe way. And that leads to problems with kidneys. And that can of course be, be pretty detrimental.

Host: Yeah, I see what you mean. And how do you work together to determine whether bladder incontinence is anatomical or neurological?

Dr. Jacobs: That's a good spin off of the question about how we work together, because that's exactly as Dr. Weprin was saying, they will typically get us involved when it's not just incontinence, sometimes it's urinary retention where the bladder can't get urine out at a safe pressure, as I was saying before.

And so typically, regardless of whether or not there's incontinence or some other problem, we'll do a number of different tests on the bladder and the kidneys to see what type of functional problem there is, whether that's with the bladder itself or with a sphincter muscle, And those tests can be things that are non-invasive testing. Things like ultrasound, or even things that involve some kind of invasive monitoring, like a catheter placement either just for a simple radiographic test where you put some x-ray contrast or dye into the bladder and take pictures, or monitors where we can actually put a catheter in the bladder and one into the rectum, and measure pressures as we fill up the bladder. That's called urodynamic testing. And ultimately that's something that all of our patients with spina bifida typically get, oftentimes, very early in life, even as an infant, or as they get older to monitor or to test for changes, or if we need to do any type of surgery to help with something like continence or high bladder pressures.

Host: And Dr. Jacobs, can you share some details about the Spina Bifida and Neurogenic Bladder Center at Children's Health?

Dr. Jacobs: One of the great things about what we have set up at Children's is that we work hand in hand with Dr. Weprin and the folks over at the Scottish Rite for Children's And, so, basically what we have is our regular urology clinic, but we have what's called multi-channel urodynamic testing there. And of course all the other resources at Children's in terms of imaging and other testing. But I think the bigger piece of it is that we have a great team of people from the physicians to social work, and physicians all kind of backgrounds. So, both the folks that do surgeries, like who you have on the call right now, but also Dr. Adams who has credentials both at Children's and Scottish Rite for Children's working together. So, we do most of our outpatient clinic, just regular visits over at Scottish Rite for Children's but we do most of our testing and surgery over at Children's. So that's sort of the nuts and bolts. I think Dr. Weprin might have some more background from the neurosurgical side, but that's sort of how urology works, as far as the neurogenic bladder is concerned.

Dr. Weprin: I think that the difference that sets us apart is really our coordinated and multidisciplinary care. So, I know who I'm speaking to. I can rely on who I'm dealing with and I trust them. And as a result, my patients get better care.

Host: Coming back to you, Dr. Weprin. What are some of the challenges that you all face?

Dr. Weprin: Personally, I believe that our biggest problem is access to quality and competent care in a consistent fashion. And that's where I'm speaking on behalf of the patients and families. And I believe there are some significant barriers to this access and they include, for instance, geographic variability. I mean, if you live in the metroplex, it's easy to get to us, but we also have a responsibility to care for individuals in east Texas, or west Texas, where the level of care is just not the same. And it makes getting in to see us, a little difficult. I think some people, some individuals have problems accessing our care because of socioeconomic status, they can't get off of work And then there are just inherent intrinsic social and familial barriers in which perhaps there's a lack of understanding, or even denial on the part of parents regarding the association of bladder problems and its impact on overall health. So, the importance of maintaining bladder health in this population of individuals simply can't be overstated.

Host: Yeah, I think you're so right. And Dr. Jacobs, what targeted treatments do you provide to patients?

Dr. Jacobs: with regards to bladder function, we have a number of different things that we can provide. some of it depends on what the underlying issue is. So, we always have to make sure that there's not a persistent issue, from the standpoint of the spinal cord. One problem that can arise with patients who've had any kind of spinal surgery, but particularly in our spina bifida patients is that they can have tethering of the spinal cord that can go unrecognized.

And maybe at a later point, Dr. Weprin can speak more to that. But as urologists, even if we see a problem that appears to be a rising from the bladder, we have to keep in mind that something else might be happening that's causing that. And then as far as treatment of either higher bladder pressures or urinary incontinence, which are two of the things that we're trying to help with our patients, we try to kind of work from least invasive to more invasive, meaning that, you know, it may be that they can be managed just with medications alone. Most of our patients with spina bifida end up on some form of what's called intermittent catheterization program, meaning that in order to empty their bladder, stay safe and dry, they actually pass a catheter into the bladder every few hours during the day, while they're awake to empty their bladder.

Sometimes that, with medications is enough or occasionally if the bladder is either too high pressure and unsafe for their kidneys, or if just, despite all other measures, they're not able to be socially continent and understandably do not want to be in some kind of pull up during the day, we can do surgical interventions. Kind of work our way up. So that's, we can try to provide them something that's easiest for them.

Host: Yeah, I see what you mean and want to give you a chance Dr. Weprin, what are your thoughts on the targeted treatment options?

Dr. Weprin: I think it's important to work with individuals he alluded to this, who are not just fixated on treating, or intervening on a particular symptom or problem, but trying to understand where that problem is coming from, because it may have far reaching additional issues or problems.

And so being able to work with Dr. Jacobs works closely with myself and with my partners, provides us some comfort, knowing that if he identifies a problem, he knows that, well, there could be a spinal cord issue and he's going to work that up and communicate that with us. And that, really is part of our multidisciplinary approach to care.

Host: Yeah, it sounds like it. And Dr. Jacobs, how does the care you provide differentiate from other hospital systems?

Dr. Jacobs: I think we have a very special group of people. I always tell folks, I feel honored to work with folks like Dr. Weprin and his team that really, a great group of neurosurgeons and it helps to be able to think he used the word trust earlier, but trust the people that you work with. I think that can be said equally about Dr. Adams and the folks over at Scottish Rite for Children's . And then just the support system that we have, that kind of underpins all that with social work over at Children's. They help with our transitional care for the older patients, which is unique to ourselves in the region.

I think that one of the hardest parts of treating these patients successfully has nothing to do with the medications or the surgeries, it has to do with how you're able to keep all these pieces together and make sure that a family is able to follow up and understand the treatments and have that kind of support that's really critical for a complex condition like spina bifida.

Host: Yeah, I see what you mean and can really appreciate the importance of just the education, the understanding on top of the medicine and all of that. So, great multidisciplinary approach, and I can hear the pride in your voices about the work that you do together, the work that you do for patients and families. And as we wrap up here, Dr. Weprin, what would be your final thoughts, your takeaways on today's topic?

Dr. Weprin: I can't stress enough about the importance of our overall program that we have a multidisciplinary team that communicates directly, virtually and digitally. And that we also share an identity and a purpose to provide comprehensive care to individuals with spina bifida.

I think that it provides a holistic approach to care to these individuals. I think it also is a patient-centric approach that when you have professionals from multiple different disciplines, all work together to deliver comprehensive care, that addresses the needs of individuals with spina bifida for multiple different problems in an integrated fashion; I believe that care is better. I believe that unnecessary errors are avoided. I believe that we simply have better communication and trust, between all of the team members, providers meaning the physicians and then the other healthcare workers and providers we get to interact with.

Host: Yeah. And it does seem that the common thread has been the word trust and how key that is in all of this process, working with families and children and each other, and so on. So I'm going to give last word to you, Dr. Jacobs.

Dr. Jacobs: I don't think that I can say it any more eloquently than, than Dr. Weprin just did. I would just emphasize the fact that this is such a complex group of patients. And I think the way he put it, you know, individualized care is so critical because there's such nuance in treatment of a problem that can show up in so many different ways in different patients.

So, I think that, that kind of individualized care and multidisciplinary approach with people that work together closely is what makes at least this place, special for me.

Host: Yeah, it's definitely not a one size fits all and individualized care, especially when we're talking about children and families is just so great. So, thank you both. And you both stay well.

Dr. Weprin: Thank you.

Dr. Jacobs: Thank you very much.

Host: And that was Dr. Bradley Weprin, Division Director of Neurosurgery and Director of Neuro-Oncology at Children's Health and Professor at UT Southwestern and Dr. Micah Jacobs, Pediatric Urologist at Children's Health and Associate Professor at UT Southwestern. And thanks for listening to this episode of Pediatric Insights. You can head to childrens.com for more information.

I'm Scott Webb. Thanks for listening. And we'll talk again next time.