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Virtual Didactic - Spina Bifida presented by Maya ...
Spina Bifida Led by Maya Evans, MD
Spina Bifida Led by Maya Evans, MD
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All right, let's go ahead and get started. Want to welcome everybody to AAP Virtual Didactics today. My name is Sterling Herring. I'm a PGY3 at Vanderbilt University in Nashville, Tennessee. As always, want to recognize and appreciate everybody who has been on the front lines of this COVID-19 pandemic, recognize that the burden for this has not been equitably distributed. So we appreciate those of you who have been personally or professionally more effective than the rest of us. So we're going to go through some of the goals of this online didactic series are to augment didactic curricula to offload overstretched faculty with some of the logistical challenges associated with current times. We recognize that faculty and departments are under a lot of pressure to provide additional learning opportunities for off-schedule residents. Again, the logistical challenges of this have necessitated a lot of shifts and we recognize that. We also wanted to develop more digital learning resources and support physiatrists in general during COVID-19. And as a part of that, these lectures will be maintained online for at least through the end of this calendar year, through December 2020 at least. Housekeeping wise, we're going to keep everybody video and audio muted as always. If you have any questions, please click your participant list. If you scroll up near the top, you should see my name, Sterling Herring. You can double click my name and send me a message, which I will then relay to our presenter at an appropriate time, often at the end of the lecture, but if there are any pauses in between. If you have any questions about the lecture series itself, any suggestions, concerns, please feel free to reach out to me directly or to Candice. Her email is there, or you can find us on Twitter. So without further ado, we're excited to have Dr. Maya Evans here with us from UC Davis. Thank you for joining us, Dr. Evans. Thank you so much for having me. I really appreciate it, and I'm very excited to talk to you about a topic near and dear to my heart. I am the medical director of our Spina Bifida program over at Shriners. I'm going to try to share my screen with you so that you can see my slides, so please let me know if I am having any trouble with that. Terrific. All right, so here they are. Good. That looks good? Yes. Thank you. So I would like to start with this picture. It is a baby with an unrepaired myeloma, and I have the pleasure of caring for about 200 people with myeloma, and I've actually never seen one unrepaired, so kind of this drawing always gives me, although I don't quite know the full story of what my patients and families have been through. So I always start with definitions. Spina Bifida is kind of one of those cool, not very specific terminologies that we use in medicine. I think the other example in pediatric physiatry is cerebral palsy. When you are reading Spina Bifida in a textbook or a journal article, it usually means myelomeningocele, so the vast majority of things I'm talking about today pertain to myelomeningocele, but I'll also talk about various other spinal dysreticisms or birth defects that tend to be lumped with myelomeningocele. Spina Bifida is the most common permanently disabling birth defect that is associated with life. In the U.S., about 1,500 children a year are born with Spina Bifida, and when you look around the world, countries in Europe tend to have much less, and then there are countries in Africa with much more, so it's a broad spectrum across the world. In the U.S. right now, the CDC estimates that there are 166 people living with Spina Bifida, and coincidentally, the proportion of people with Spina Bifida living became higher, so more people living with Spina Bifida than children, and that's a big shift, and we're learning a lot of things about living and thriving in adulthood with Spina Bifida during this time. Great. So Spina Bifida is part of the neural tube defects, and these are the second most common set of birth defects after congenital heart disease, and the location of the defect determines the presentation. So if it's at the rostral end, there can be an anencephaly. If it's at the caudal end, there can be a Spina Bifida. These neural tube defects can be open or closed. When you look at spinal defects in the rostral or low end, an example of an open defect would be a myelomeningocele, and an example of a closed defect would be a meningocele. So let me show you some pictures of those. At the top, the picture on the right is kind of that typical picture I think we had in our anatomy textbook, and it talked about the different kinds of Spina Bifida. And so what you're really looking at is the spinous process of the vertebrae. So typically, it is a singular point, and you can kind of track them all the way down an individual's spine. In Spina Bifida, it doesn't close properly, so it looks bi-fitted open, and it can be a closed defect, like a Spina Bifida Occulta. So the posterior elements don't close properly, but the area is covered with skin and muscle and fascia, and all the neural elements are intact. So we were talking about the vertebral spinous processes, and in Spina Bifida Occulta, the posterior elements don't fuse properly, so you get a bi-fitted open area, and you can see it nicely, and about 15% of the population, typically it is asymptomatic, and very rarely it's associated with a tethered cord, which we'll talk about later, but the bottom line is it's usually asymptomatic. Another closed defect is the meningocele, so that's in letter C, and you can see that it's a bubbling out, but it's skin covered, and this one can cause variable impairments, and that's what we'll be, those are the impairments that we'll spend most of the lecture talking about. D is a myelomeningocele, or meningomyelocele, and that's the picture of the baby that we saw before, and this contains the neural elements, so the bubble contains, depending on where in the spinal cord this happens, the various parts, but typically it's low down and contains kind of like the cauda equina area. You can also see in the picture of the baby below, what is a Chiari 2 malformation, so you can see that his brain stem is kind of low in the foramen magnum, and you can also see that his ventricles are enlarged, so hydrocephalus and Chiari 2 malformation are typically part and parcel of spina bifida. Spina bifida, or myelomeningocele, happens early in embryogenesis, around day 7, and completes the process of neurolation, completes by day 30, and people with myelomeningocele typically have some degree of lorox trimity weakness, neurogenic bowel and bladder, as well as learning disabilities. On the next slide, you'll see some other diagnoses that we tend to treat at Spina Bifida Clinic, and they kind of get lumped in with spina bifida, so there's cauda regression and sacral agenesis, typically associated with diabetic embryonopathy, and you can see the picture on the right, and the child has a very narrow pelvis, and that's due to lack of proper formation of the sacrum. A lipomyelomeningocele is also a closed spinal dysraphism, where there's a fatty tumor or mass that kind of tethers the spinal cord down, similarly a fatty spinal cord, and diastomatomyelia, which is a central area that kind of splits the cord in half. When you do a physical exam, you're always looking for hairy tufts or dimples, and when you see a hairy tuft, it is true and very thick hair, like in that picture. Sometimes they get called for lanugo, which is typical baby hair, and so it's a very different feel, it's a more coarse hair. On the next slide, we're talking about what causes spina bifida, and that is a great question. I think that there are multiple things that can cause spina bifida, and that's why we haven't been able to make as big of a difference with prevention, but we do know that there is some genetic components. After having one child with spina bifida, the chances of having a second is 2-5% in subsequent pregnancies. We know that people of Hispanic descent have a higher rate of children with spina bifida, and that kind of goes along the genetic idea. Additionally, there can be environmental things, so increased temp. Sometimes the history shows the mother being in a sauna early on or a hot tub or having a high fever. Maternal obesity is linked to gestational diabetes and diabetic embryonopathy. Exposure to various work-related chemicals, and even we see a slightly higher rate in healthcare workers, possibly zinc deficiency, and some medications that can impair folic acid metabolism, such as valproic acid. On the next slide, prevention of spina bifida focuses around the supplementation of folic acid, and the CDC recommends 0.4 milligrams of folic acid for all women of childbearing age. There's a new gene that some people are getting tested for, the MTHFR gene, or methyl tetrahydrofolate reductase enzyme, and there's several variants. These are all felt to be normal, and it's associated with a slightly lower uptake of folic acid, but it's not impaired, and you don't need a specific kind of folic acid per the CDC. All women of childbearing age are recommended to take 0.4 milligrams of folic acid a day. When you have had one baby with myelomeningocele, or you're at increased risk, you should take 4 milligrams, 10 times the dose, one month prior to conception and through the first trimester, and this has been shown to decrease the risk of spina bifida in subsequent pregnancies. In 1998, the U.S. mandated adding folic acid to grains, and we noticed about a third, or 1,000 less babies born in the U.S. with spina bifida a year, so it didn't go away completely. Additionally, we just started allowing voluntary, so the grains are mandatory, and the masa, or the corn flour used for tortillas and other things, is now voluntary, so you have to search that out. So, that's something that I do recommend that people look for when they're buying groceries. And on the next slide, we talk about diagnosis, so usually the first indication that the baby has spina bifida is during the quad screening, the blood test in the second trimester, and that will have an elevated alpha-fetoprotein that will prompt high-resolution ultrasound and amniocentesis. The amniocentesis will also show an elevated alpha-fetoprotein and acetylcholinesterase, and then we'll typically proceed to an MRI to look for where along the spine those bifid processes are. The lemon and the banana signify ultrasound findings in the brain that help tip off the ultrasonographer, and I just love this picture of a cute little baby bottom that is post myelomeningocele closure. You'll see on his low back a little scar, and all the patients in spina bifida, or many of the patients in spina bifida clinic have this on their backs, and so I think it should be celebrated as part of their unique history. On the next slide, there's a number of other malformations that are associated with spina bifida, and I think about this along the lines of somites touching somites and having decreased differentiation. We talked a little bit about hydrocephalus and Chiari 2 malformation. You can also see various issues with the sulci, gyri, dysgenesis of the corpus callosum, heterotopias of the gray matter. In the spine, you can see a gibbous deformity as well as hemi-vertebrae, fused ribs, all of which predispose to worsening scoliosis as the children grow. Renally, sometimes you see absent kidneys, sometimes you see horseshoe kidney, and we'll talk more about neurogenic bladder, but that can certainly play in with your reserves of renal function, and sometimes people with chromosomal abnormalities will also have spina bifida, so there's a higher incidence in trisomy 21 and trisomy 13. On the next slide, we talk about closure of the myelomeningocele, so if the baby is delivered at term, it is done within the first three days of life to prevent infection, so the area is carefully covered with saline and sterile dressings, and they're started on the IV antibiotics, and then that area is closed. Myelomeningocele surgery was started in 1997, and the surgery is typically done before 26 weeks, and this and all subsequent pregnancies need to be delivered via C-section due to the uterine incision, so in the picture below, you can see the uterus is exposed, and then the baby's spine is out, and you can see the myelomeningocele, and then you can see how delicate that repair and closure is. On the next slide, I talk a little bit about the MOMS trial, which was started shortly after the first fetal surgery, and this happened at several sites across the country, and those were the only people at the time doing fetal surgery, because they wanted to see if this was more efficacious than standard repair, and so they randomized 183 dyads, so that means a baby with prenatal surgery and a baby without, and they were going to do 200, but they stopped early due to efficacy of prenatal closure. What they did notice was an increased risk of preterm delivery and maternal complications such as infection. On the next slide, the MOMS outcomes, so there's been several studies following these children throughout their life, and what they noticed was a decreased need for ventricular peritoneal shunt, and it wasn't so much necessarily, it was a decreased risk of hydrocephalus overall, but there was also a less shunting done in those who received prenatal surgery. So, if you see the first bullet point, the prenatally repaired babies had a rate of 72% of hydrocephalus and only 44% were shunted, whereas the postnatally delivered babies, 97% of them had hydrocephalus and 83% of those 97% were shunted. Their outcomes were typically improved by age of 30 months. With regard to neurogenic bladder, it did not totally get rid of the need to do clean intubant catheterization, but it improved the overall bladder picture with having a lower bladder pressure and a more closed or secure bladder neck. And then in school age, there was no significant changes in adaptive or cognitive behavior, but improved motor function and quality of life. On the next slide, we'll talk about the neurologic complications. We talked about hydrocephalus and roughly 60% of people with spina bifida have a VP shunt, and the center picture is a little baby with a shunt. And then we talked a little bit about PR2 malformation, which is the picture on the right, the lower position of the brainstem in the foramen magnum, and this can cause bulbar symptoms. Tethered cord, which is failure of the spinal cord to ascend, so if you remember, the vertebral bodies grow faster than the spine, so the base of the spine ascends in relationship to the intervertebral spaces as you grow. And if you have had surgery, like a spina bifida repair or a fibrous band like a fatty phylum, that can prevent ascension, and that can cause back pain, leg pain, changes in strength, bowel and bladder, and worsening scoliosis. Also on the picture on the right is a syringomyelia, so a fluid-filled cavity in the spine that causes weakness above the level of the spina bifida. Next slide, please. With regards to neurogenic bowel, this is a very common issue for people with spina bifida. It typically affects 87% of people with spina bifida, and it's a lower motor neuron bowel pattern, so the sphincter is flaccid, and so our approach to management is a little bit different. We know that a good bowel program improves quality of life and independence for people with spina bifida, so it's a big focus for our clinic. Typically, the babies become a little bit constipated when they switch from formula or breast milk to table food, and so we'll use a stool softener, a Miralax, a Colase, something like that. And then when they get bigger and we want to create a bowel program where they're clean in between, we will typically do a large-volume enema, and so the system up above is a rectal irrigation, which has a rectal catheter and a balloon you fill up, and then you can instill a volume in there and then release, and you'll have a good retrograde clean-out. The surgery below is called an ACE or a MACE, and that stands for anterograde continent enema or a Malone anterograde continent enema, and you can take, well, the urologist takes the appendix and tunnel it to the belly button. You insert a catheter, and then you can distill a similar amount of volume and clean the whole ascending transverse and descending colon. Typically, the rectal irrigations take about 20 minutes a night, and the ACE procedure or the clean-out takes about 45 to 60 minutes, so that's something we ask of all our patients to do, and it can be quite a difficult time commitment for teenagers, but again, it's quality of life and for their overall health. Next slide, please. With regards to neurogenic bladder, the numbers are a little bit different. Ninety-one percent to 76 percent of people with spina bifida have neurogenic bladder. We end up doing a lot of testing for the bladder because there can be a number of different patterns that we see, whether the bladder is big and floppy or, more commonly, small and tight, whether the bladder outlet is open or closed. We do a series of tests looking for upper tract changes, which means the kidney architecture looks different, so you can see the picture on the right is hydronephrosis or bubbling of the kidney, which is a sign of renal damage from vesco-uretero reflux, which is P going up from the bladder into the kidney. We'll also do urodynamics to look for that under fluoroscopy, and we'll also be able to measure bladder pressures with that. Catheterization is the most important and we have adopted a protocol where we basically catheterize all children leaving the NICU and then if they don't need it, we can stop it and obviously with numbers like that, it's pretty rare that they don't need it. Other centers will wait until there's upper tract changes or the child wants to become continent but we feel it's safer and easier to introduce if we always do it. We always want to protect the kidneys so there are a number of surgical procedures that we can do to help decrease the bladder pressures if medications such as oxybutynin are not helpful. We can do a bladder augmentation which is a picture below so you take a portion of the ileum which is where those blue arrows are and then you open the bladder up which is in the bottom portion and then you sew the section of the ileum onto the bladder and that makes a bigger bladder capacity. In addition to catheterizing, patients will have to flush their bladder with normal saline daily to decrease the mucus provided by the ileum and prevent stones. Our goal is social continence, renal protection and independence in care so typically boys can start doing their caths around age seven and girls I'm hoping before age 11 and that all depends on cognition, anatomy and a number of other features. Next slide please. Neurologic level, so I have a little picture of a snowflake to remind me that all patients with or persons with spina bifida are different and should be approached as such. So I'm gonna give you some rules but know that different circumstances have different outcomes and so always approaching a person on an individual level is helpful. So we talked about where in the spine the spina bifida happens and that roughly correlates to the level of strength. Sometimes it can be a little bit above or a little bit below the level of weakness. Similarly, sensation is affected. We tend to think about spina bifida as a lower motor neuron process however most people with spina bifida have spasticity at one point or another in their life and so that's something that we track and monitor to look for change. As a pediatric physiatrist I'm called to the NICU to evaluate these kids and so you can imagine that manual muscle testing is not an option for a NICU baby and even in clinic typically cooperation doesn't happen until about age seven so strength is difficult. Similarly, sensation is a challenge to assess. People can usually tell you if it's changed but their baseline is different and so they typically have defensate areas on the buttocks and feet and so they won't be able to give you that information because they've always had that. In the past there were six commonly level, six common classification systems for spina bifida and I listed all their names there and there was a great article in 1999 by Bartnack who compared them all and so these levels typically have things like L2-3, L4-5, S1 and they compared the same people and rated them on the different scales and they all had different anatomic levels which makes looking at the literature confusing. So the CDC started this national spina bifida patient registry in 2008 and they have a very elegant classification and it doesn't use anatomic levels but more function and so I'm gonna talk to you in the next slide about how those classifications play out. So a person with a spina bifida registry level of thoracic has flaccid lower extremities and as you can imagine, decreased muscle mass. So lack of innervation to the legs causes lower muscle mass throughout life and so when you think about what BMI should look like and lean body mass, I always try to take that into account. There really aren't specific formulas but I'm always keeping that in the back of my head. We check BUN creatinine as a measure of kidney health and so you can imagine if your lower extremities have decreased muscle mass, those markers might not get high even in the face of significant kidney disease. So we check a marker called statin C. There's a very high risk for scoliosis and lower extremity contractures which obviously limit height and also typically legs with people of this level of spina bifida are smaller and so we tend to use arm span as a surrogate for height. Scoliosis is quite common in this level as is hydrocephalus. Virtually all people with this neurologic level will have a shunt. With regards to mobility, we typically use wheelchairs for household and community distance. Kids will crawl in home and you can do exercise ambulation with an RGO if that's something that the patient and family are interested in. Next slide please. High lumbar is pretty functionally similar. These children will have hip flexion against gravity and so I also talked about the renal markers and arm span. They similarly have a high risk for scoliosis and lower extremity contracture. Slightly lower portion requiring BP shunts and again using wheelchairs for the majority of mobility. This little girl is using a homemade device and you can Google these and there's a group that gives them out to children in need and so it's a really nice way for a younger child to be able to do wheeled mobility in the community. Next slide please. Mid lumbar level. So this is the level where people have knee extension against gravity and oftentimes they have significant weakness of the glute medius. So that causes the trendelenburn gait or leaning to the side of the foot that's down in walking and this little girl in the picture is using some lost string crutches and some flurry action braces and you can kind of see this propensity for what we call pseudo valgus and so when she leans to one side, she'll kind of overload the lateral compartment of her knee and stretch the medial compartment of her knee. So using those lost string crutches helps decrease the sway of her trunk and the forces on her knees. People with mid lumbar level myelinogastenia will have a significantly lower risk for scoliosis. They may see progressive knee flexion contractures and the slide, sorry, the diagram below talks about mobility levels for persons at the different US registry levels. So the blue is community ambulation and then the middle column is mid lumbar level. So you can see that this is the level where people start doing community ambulation and you can imagine that it might be easier as a smaller, lighter person. I typically use lost string crutches, walkers when they're younger, flurry action or solid ankle AFOs and I always want them to have a wheelchair just in case of skin breakdown or longer distances so that they're not reliant on other people. It should be a manual wheelchair that they can propel by themselves. Next slide please. Low lumbar, the only difference is that the foot can dorsiflex against gravity and you have more strength in the glute medius. Having that decreases the Trendelenburg lifting but having that calcaneus foot deformity, I didn't have a good picture of an older person but this baby has that positioning. Kind of predisposes to flexion when you go to initial contact in gait and so there can be issues with kind of rate of speed, energy usage can be higher. So AFOs, lost strands, walkers and wheelchairs just as before. Next slide please. And last is sacral. Unlike the other ones to qualify for this level, you just need some degree of plantar flexion and so depending upon how much plantar flexion a person has kind of determines their overall endurance for ambulation. They can have a risk of equino-varus foot deformities kind of like you see in this picture up here and you can see that most people which is the first column in the diagram below are community ambulators. I tend to use a good deal of bracing, not so much for every day but more for like exercise. So if a person is hiking, I might consider a carbon fiber AFO to decrease their energy expenditure. If there is a need for a wheelchair, I'm happy to prescribe one and I do try to encourage people to look into wheelchair sports because the endurance can kind of preclude them from joining other activities. Next slide please. Spine, we talked a little bit about this before. It's a higher level, more likely to have scoliosis. The picture at the bottom, it's a little bit faint but you can see the gibbous deformity or kind of that posterior kyphotic deformity and that is frequently seen. Usually start to consider surgery around 45 degrees. We will brace but it doesn't prevent the curve. It's more for postural support and function. Next slide please. In the lower limbs, we talked a little bit about the deformities of the feet and knees. Additionally, there can be hip dislocation and this is a paralytic process, cerebral palsy which is a spastic process. So in spina bifida, it's very rare for us to do a surgical procedure to relocate hips because they'll likely come out again and there's been a number of studies that have shown that there's actually been a decline in ambulation after relocating the hips. So what we usually look for is symmetric hip motion and sometimes we might need to lengthen things. Feet can also have equinus foot deformities, club feet or rocker bottom feet and we address those very early on with the help of orthopedics, casting and sometimes surgery. Next slide please. Skin, we talked a little bit about skin already. So impaired sensation, people with spina bifida tend to break down on their feet as younger children and on their sacrum later. So all the same things we do in spinal cord injury and other conditions, weight shift, cushions, check footwear, skin checks. Kids should be wearing pool shoes at all times. Watch out for hot benches in the park and it's a time consuming thing when it happens and having a backup wheelchair can be very helpful to offload for feet if and when it does happen. Next slide please. Latex allergy, up to 72% of people have latex sensitivity and 20% have an allergy. It's interesting, we initially thought it was just related to having surgery early and using latex products but when you compare children with spina bifida to children who've had the same numbers of abdominal surgeries, the children with spina bifida tend to have a higher level of latex allergy. So we basically label all people with spina bifida as being latex allergic at birth and avoid it. Similarly, we should be aware of a latex fruit syndrome which means cross reactivity to foods like kiwi, banana, avocados and chestnuts. So just making people aware that that can happen as well. Next slide please. Obesity is a big issue in our spina bifida population. After age six, about 50% of people with spina bifida are overweight and in teens and adults, it's up to 50%. We talked a little bit about the anthropometrics and difficulty determining a BMI. So sometimes we'll use subscalpular skin thickness to look at that. The things we encourage are physical activity and looking for those activities that the person enjoys and we try to encourage the whole family to do healthy eating and for parents not to use food as a reward. For example, if you behave at the doctor's office, we will go to McDonald's. We should say, if you do a great job here, let's go to the park. Next slide. Osteoporosis, so lack of weight-bearing can cause decreased bone mineral density and it's usually below the level of the lesion. The femur and the tibia are usually the areas of fracture. So we check vitamin D levels, encourage proper calcium, sunlight and weight-bearing. Very rarely will a child need bisphosphonates but that has been used and getting to standing or weight-bearing as soon after surgery has been shown to be beneficial for this. Next slide, please. Cognition, we talked a little bit about learning disabilities and historically, persons with spina bifida were thought of as having a typical IQ but newer research shows that about 30% have a normal IQ, 40% have an intermediate and 30% qualify for a diagnosis of disability. Typically, executive functioning is impaired. You start the things you're supposed to start when you're supposed to start them. Can you sustain them? Can you complete your task? Can you inhibit inappropriate responses and can you switch to things that need to be done? Kind of adulting in a nutshell. There's also some issues with visual and auditory memory as well as visual and temporal perception which can make things like remembering to cast every three hours much more difficult. There can be some difficulty with social cues. So we work to get an individualized education plan and accommodations in school, encourage neuropsychologic testing if at all possible. Most people with spina bifida will graduate from high school, however, it's that transition to adult life that tends to be more difficult and so we work really hard with our adults and teens about maximizing independence and helping them learn the skills to take care of themselves. Next slide, please. Sexuality is something that's frequently overlooked and so we wanna provide appropriate education. We wanna keep our patients safe and these are people who have been catheterized for life so awareness of private, sometimes lack of awareness of private space could almost be seen as a predisposition to sexual abuse and so being aware of that and teaching children about that from an early age. Also avoiding latex conduct given the high frequency of allergies. About 20% of people with spina bifida will get married. Fertility is typical in women. In males, sometimes need assistance for conception. Next slide, please. Transition to adult life. So gosh, I think about when I graduated from high school and I don't even know if I knew my doctor's name, let alone if I had any allergies or medical conditions and so we're asking people with spina bifida to know a number of specialists. Their orthopedist, their neurosurgeon, their urologist, their physiatrist, their primary care doctor. Maybe they have seizures so they also have a neurologist. Their catheter site, their catheter vendor, their orders, their medications, their allergies, their surgical procedures. So there's a lot for them to learn so we start early talking to children, helping them learn their medical history and helping become fluent in that and work through the problem solving that they need to do to live independently. Chores, encouraging kids to do chores and become more independent is very important to living outside the home and self-advocacy, being a part of your IEP, advocating for your needs in different situations. And then the last thing I always wanna make a plug for is adaptive sports and recreation. Play is the work of childhood and so two amazing people with spina bifida in this slide. On the top is Aaron Wills Fotheringham. He's a part of the Nitro Circuit and he has his own Hot Wheels and he talks openly about his spina bifida and not seeing it as a barrier. And at the bottom is Tatiana McFadden. She is a wheelchair racer, Paralympian extraordinaire, won so many medals. So really nice athletes there. Next slide. Just a plug for the Spina Bifida Association. It's a national group founded in 1973 by parents of people with spina bifida. They provide support through local chapters. There'll be walk and rolls, meetups. They provide advocacy. So bottom is Teal on the Hill. They'll go to the Capitol and advocate for money and support for people with spina bifida. They are the reason that we have the Spina Bifida Patient Registry and now we have Clinical Care Partners which is a seal of approval for your spina bifida program. They publish guidelines, evidence-based guidelines for the care of people with spina bifida and there's amazing education on their website. There's a number of PDFs that you can see there and research, they help guide research coming forward in spina bifida. Thank you guys so much. I think I left five minutes for questions if you have any. Perfect, thank you so much. This has really been helpful. We don't get a lot of education, at least I don't get a lot of, I haven't seen a lot of education specifically on this topic so I think this is really helpful. Thank you. I'm not seeing any questions. If anybody has any questions, please feel free to send them in the chat. If not, hold on, let me see if we have, there we go. Yes, we have your email address. Is that an accurate email address for you? It is correct. All right. So if any questions do come up, we can reach out to you directly, is that okay? That would be great. Okay, so many of our, as people are kind of transitioning back into some semblance of normalcy in terms of clinical schedules, we're finding that a number of our viewers are moving to a delayed viewing format, kind of watching the recordings as they're able to get out of clinic and whatnot. So I imagine some of our questions will come from individuals who watch this later. So they can reach out to you directly at that email address and ask any questions that come up. Definitely. Okay, great. Thank you again. This has been really phenomenal. We appreciate you joining us today. We apologize for some of the technical difficulties, but I was glad to be able to work something out. For anybody who- Thank you for all your help. Yes, absolutely. For anybody who joined us today and wants to refer a colleague to watch this or wants to go back and see something that they missed, or if you're like me and we're getting pages every five minutes, that website right there, physiatry.org slash webinars is where you can go on and watch the recording of this. And you can reach out to Dr. Evans there at her email address, or you can contact me or AAP on Twitter. Thank you again for joining us, Dr. Evans, and thank you all of our participants today. We will get started with the next lecture here in the next five minutes or so.
Video Summary
In this video, Dr. Maya Evans discusses spina bifida, a birth defect that affects the spinal cord and surrounding structures. She explains the different types and classifications of spina bifida, as well as the causes and prevention methods. Dr. Evans also covers the various complications and challenges associated with spina bifida, including hydrocephalus, neurogenic bladder and bowel, orthopedic issues, cognitive impairments, and sexual health. She emphasizes the importance of early intervention, proper medical care, and support for individuals with spina bifida. Dr. Evans also mentions resources such as the Spina Bifida Association, which provides education, support, and advocacy for people with spina bifida. Participants are encouraged to contact her directly with any questions or concerns. The video is a part of the AAP Virtual Didactics lecture series and will be available online for at least until December 2020.
Keywords
spina bifida
birth defect
spinal cord
complications
support
prevention methods
cognitive impairments
resources
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