SCI Care: What Really Matters
SCI Care: What Really Matters
Optimal care of spina bifida during different stages of life
In this episode, host Rima Kamal (Wellspect) explores the complexities of caring for children with spina bifida with Dr Fahad Alyami, Head of the Saudi Paediatric Urology Group and Associate Professor at King Faisal Specialty Hospital and Research Centre in Riyadh. The discussion delves into the critical aspects of paediatric care for those with spina bifida, from early intervention to adolescent transition. Dr Alyami explains the importance of bladder management from birth, the challenges families face in daily care routines, and the crucial role of multidisciplinary healthcare teams.
The conversation addresses key aspects of paediatric care, particularly the transition from childhood to adult healthcare services. Dr Alyami emphasises the significance of specialised spina bifida clinics where multiple specialists can coordinate care under one roof, highlighting the development of transitional urology as a subspecialty to bridge the gap between paediatric and adult care. The discussion concludes with inspiring success stories of individuals with spina bifida who have gone on to lead fulfilling lives, including having families of their own, demonstrating how proper medical care and support can positively impact life outcomes.
The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.
You can follow us on Twitter and LinkedIn
The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".
Contact us directly with any questions or comments at iscos@associationsltd.co.uk
Estimates indicate that around 200,000 children worldwide are born annually with the congenital condition of spina bifida. How does an optimal care for these children look like through different stages of life? Together with you, our listeners, we will explore this topic today. I want to start off with a warm welcome to all of you to this new episode of the SCI Care podcast series. This episode is brought to you in partnership with WellSpect Healthcare, a global medtech company that produces medical devices for bladder and bowel management. My name is Rima Kamal and I'll be your host today. I work at WellSpect and I share Esco's vision of facilitating healthy and inclusive lives for people with spinal cord injury. To explore the optimal care of spina bifida and to answer to our many questions on the topic, we have a seasoned urologist with us today Dr Fahed Alyami. We have a seasoned urologist with us today, dr Fahed Alyami. Dr Fahed, thank you for joining us here today.
Dr Fahad Alyami:Thank you, rima, for this nice introduction, and I'm happy to be part of this podcast to share our knowledge and help our patient, as we all always strive for our best patient care. So thank you again.
Rima Kamal :Dr Fahed, you have an impressive resume. So thank you again, dr Fahad, you have an impressive resume. You're currently working at King Faisal Specialty Hospital and Research Center in Riyadh, saudi Arabia. This is the largest governmental reference hospital in the country. You're also the head of the Saudi Pediatric Urology Group. You are an associate professor as well, with an extensive list of publications, and then as a pediatric urologist, you also specialize in robotic and minimally invasive surgery. Did I get that right?
Dr Fahad Alyami:That's right.
Rima Kamal :So, dr Fahed, let me start off by asking how a typical day at work looks like for you. What type of patients do you see and what type of interventions do you do?
Dr Fahad Alyami:Okay, so pediatric urology is becoming a busy specialty as we deal with kids, with issues that's related to their kidneys, bladder, ureter and genital system and that can be a mix of congenital which things that the babies are and kids are born with, or things that develop as they grow, like stones or cancer cases or issues with blood control or daytime waiting, nighttime waiting. Either this is something pathological or something physiological. So we deal with stones, we deal with cancers, we deal with the issue with urinating or issue with controlling the urine. Also we deal with the issues related to testicles, where those kids might be born with testicles not in place and we have to bring them down to the normal place so it can function normally, so they can have normal puberty and normal fertility life in the future. And in addition to that, we see kids with some issue related to their behavior, that they were not totally trained properly or they have issue with controlling their urine or stool. So we deal with the urinary and also the genital system for those children, either congenital or acquired diseases.
Dr Fahad Alyami:And usually in our practice we see kids in clinic, we operate in them, we have labs or we do some testing to know the proper diagnosis, mainly urodynamics, some radiological tests that we use, with the help of our colleagues in radiology, to help us diagnose those kids properly and reach to a proper diagnosis.
Dr Fahad Alyami:So we see kids, we diagnose them, then if they need surgery not all urology patients or pediatric urology patients need surgery and if they need surgery we counsel the parents with options going with the best standard of care and also share with them the knowledge in a scientific manner so they help us to make decisions together to reach to the best care for the child.
Dr Fahad Alyami:And uniquely in pediatric urology and pediatric subspecialties, you're not just dealing with a patient, you're dealing with a family, and that creates an important aspect of dynamics that we have to take in consideration that you're not just dealing with one person, you're dealing with the whole family and sometimes even close family can be father, mother, grandfather, grandmother or even uncle or aunt. Sometimes the child might be with a child giver, that non-family member that's taking care of the child. So we have to look at psychological, you have to look at social and you have to look at medical aspects and put them together to reach the proper diagnosis and proper management. So we're dealing with a unique situation where you have to take into consideration all the aspects to assure you're giving the child the best care, as much as you can, with the help of the family and also the child if they reach the age where they can be a part of the decision.
Rima Kamal :That's really a wide spectrum of conditions that you're dealing with and definitely many specialties involved, as you point out as well, dr Fahed. And from this broad category of patients, I'm going to zoom in on children with spina bifida. How big of a category are these children in your care and from what age do you typically follow them?
Dr Fahad Alyami:Okay. So spina bifida is a condition that we see since the baby is born and usually those kids are diagnosed in utero. For the majority of the cases that means they're already counseled by the obstetricians about the condition and they might be offered the intervention in utero. But for us as pediatric urologists we have to see them just after birth and usually they get operated and their spinal cord fixed as soon as they're born fixed as soon as they're born. From urology.
Dr Fahad Alyami:The bladder dynamics is different in those kids and the bladder can be affected in a good number of them. So we do see spina bifida. I would say it's 10 to 15 percent of our patients in our practice. Those patients we see them since birth till we graduate them to adulthood life, where they continue with other cares, graduate them to adulthood life where they continue with other cares. We tend to see this patient for a long number of years and that's why we tend to keep in our mind different aspects of care as they grow and that can change with time and we can go over this through this discussion. But we see them since birth up to age of 14. In some hospitals or some countries the age of transition to adult can change between 14, 16 or 18, depending on what country and what hospital you work in.
Rima Kamal :Very interesting. And why is it that there is this cut of age then, at the age of 14 now?
Dr Fahad Alyami:Because I think, firstly, they're adults, so first they're part of the decision, so they have to be the main cornerstone of the management, the decision. So they have to be the main cornerstone of the management. And also, uh, the need is different because they reach the age they start thinking about their sexual life, about future fertility life, about the uh, them needing to be independent. So you have to prepare them for that and if you don't do that, they reach the point uh, they cannot help themselves and they cannot or they will not let others to do this part of their care, because either they're shy or they think they should have their own privacy. So you have to prepare them and transition them properly so the sequence of care, the chain of care, continues so they don't have a drop in their care because maybe they would do well for years. Then, when they graduate them to adults and consider them as adults, they're not ready to do their own care. Then their kidney function can be affected.
Rima Kamal :So, from what I understand, dr Fahad, there are multiple facets, then, and challenges that face children with spina bifida. There are social challenges, but then also there are the typical challenges you mentioned that relate to bladder and bowel care. So let me ask you this Generally how is the quality of life of children with spina bifida? What do you see in your practice?
Dr Fahad Alyami:I think that's a good question because it's a spectrum. The effect of this condition on the children or even in the patients overall adults or pediatric is variable. That's mean A good number of them are wheelchair-, wheelchair dependent and depend on the level of spina bifida, which can vary either from the neck to the back to the lower back and depending on the level the effect is different. One. Two it's a dynamic disease. That means if you're stable now with your growth, even if your surgery was done early in life, things can change. That means tension can happen in the nerves that control your bladder and control your bowel. That means those children might have worsening conditions in the future. That's why they need long-term care.
Dr Fahad Alyami:But in this perspective the level of panephida is one. Two the dynamic of the disease is two. Three is the effect of the disease because some of these kids are ambulatory, that's mean they're walking, playing sports and doing their own things. Some are not, some are handicapped, some are wheelchair dependent, some doesn't have even hand moves or lower limb and feeling, some are numb, some do not have feeling at all and this can change from one state to another. Knowing that those kids follow up with neurosurgeon, because this is one of the other specialty that help to take care of these children. So they have to monitor their nerves throughout imaging and also physical exam to assure as they grow. Because when the kids get taller sometimes tension happen in the nerves and can change the condition from a stable condition to unstable condition.
Rima Kamal :So I conclude also, then, that there are many challenges that face you as healthcare professionals caring for children with spina bifida. As you pointed out, their condition varies and also the type of interventions needed. So what would you say? The main challenges are that you and your fellow urologist experience in your work with children with spina bifida.
Dr Fahad Alyami:So, before I start with the challenges, I think we as pediatric urologists, our role and this condition for those children is if you have spina bifida, a good number of the patient does have what we call neurogenic bladder. Neurogenic bladder, that means the bladder is very tense, the pressure in the bladder is high and you might not be able to empty your bladder properly, which can put you at risk of renal function worsening, urinary tract infections, kidney or bladder stones or even incontinence where you might be leaking, requiring diapers and things like that. So we as pediatric urologists, our role in the management for those children is to assure that the bladder is safe for the kidneys, mainly for kidney function, and to avoid the consequences. So the main steps in treatment of those children are lowering the pressure. The lowering of pressure can be either with avoiding, if they have full control, or with emptying the bladder with catheters and that require family doing it early in life and later on the child Medication that help to lower the pressure in the bladder and that can be either as a liquid or tablet or even Botox injection or future surgery which we, if the bladder is too small and under too much tension, we make this bladder bigger, which we call bladder augmentation. To make catheterization easy, we do also a procedure called mitrofinov where we take the appendix, disconnect it from the bowel and connect it to the belly button. So the child will do his emptying through the belly button, not through the urethra.
Dr Fahad Alyami:So this takes me to the next part of the discussion. What are the challenges? Knowing that this is the journey and the care those kids need from urology point of view. So that's mean First someone needs to do the catheter. So you can imagine having a family who are just baby born and they're waiting for it for nine months and now this is the baby and they have this complex medical condition. So psychologically it's stressful. So they're going to go through the shock and grief and feeling have they done something wrong to the baby? Did they cause this or that? So psychological, social, because if they need to do catheters, there's a cost, so they have to do catheters. There's a cost, so they have to buy catheters. If it's not covered by insurance, depending on where this patient lies and what the country healthcare system is in terms of coverage, you need catheters, you need the medications and also you need a regular follow-up, psychological, social and medical. So putting this all together. Put this family first. This is the new baby Two.
Dr Fahad Alyami:They have to do something that's invasive. They have to put a tube through the patient's urethra for a male or female to empty the bladder, and this has to be done every four hours, you can imagine, because this has to resemble the normal voiding habits for children, taking medication regularly, two or three times a day, every day for years. This is also time consuming and also it's a commitment. So if you have working parents, they have to take time from work so they come home to do the catheters or they hire somebody to do it at home. So the challenge is first is acceptance. So you have to explain to them, counsel them, and that's sort ofero since they're pregnant. But we continue afterwards.
Dr Fahad Alyami:Sometime, meeting with the different specialties while the mother is still pregnant is the key because you have to prepare them, connecting them to a support group, so they have to listen to others. What are the challenges faced? How did they get through them? And this can be throughout the stages of care, either while pregnancy, pregnancy after birth or later on when you need to do surgery. So you have they have to talk to someone who went through the surgery. How was it? Did it change the quality of life? Then we move forward to. So we talked about the acceptance, now teaching.
Dr Fahad Alyami:So you need to have a dedicated uretherapist nurse who sits with the family go over the catheterization procedure. It has to be a clean technique to avoid causing infections. Doing this in the mannequin, doing this on the child, doing it with the mother, letting her do it on her own, then we cannot start the medication till we assure that those parents are doing the catheters at home. So then we send them home for a month. They start doing it every four hours. Then, when they're compliant and happy to do it, then we start the medication because we don't want to paralyze or even make the bladders very loose without emptying it.
Dr Fahad Alyami:Then the challenge moves to the supplies. There's different type of catheters. There is cost to it. There is the classic, which is cheap, there is the more advanced, which is expensive. This comes with the medication coverage and things like that. If they need to transfer the child to the hospital, especially if they're handicapped, they need special arrangement, they need a special car, they need to have point of contact. If an emergency happened, if an injury happened during catheterization, then this challenge continues to transition. That means when you're ready to send those patients to your colleagues adult urologist or neurosurgeon. They're attached to you already. They've seen you for 14, 15, 16 years, happy with you. Things are stable. So they're worried about moving to somebody else who does not know the history, who never met them. They feel attached to you, but we this is how the this is life in medicine Adults take care of adult patients and pediatric doctors take care of pediatric doctors, pediatric patients and some rare occasions there is some physicians decided to take care of both.
Dr Fahad Alyami:That's mean willing to continue to take care of both. But the challenge we face that the need is different. They need to know are they going to be fertile? Can they have babies, what type of delivery they should have Scleric section of vaginal delivery, can they have erection? Can they take medication for erection? And the pediatric urologist is not the best person to treat those conditions.
Dr Fahad Alyami:It's like a journey.
Dr Fahad Alyami:We as practitioners have to make this as smooth as we can by bathing the road, by preparing them, talking to them, explaining to them, involving them in decision and also involving the child as he grows.
Dr Fahad Alyami:So we aim to get the child to do his own catheters at age of 10 to 14 years of age. This is the window that we try to get him to start doing it, at least once a day or once a week or whatever, so he's prepared when it's time. He doesn't want anyone to look at this area. He doesn't want anyone to look at his private area, so he will start doing it himself. Also, some of these children might not have good hands shaky or not feeling their hands properly so these patients would need somebody to help them throughout their life. So this is one of the challenges we face. So it's a journey, I would say. The majority of the time it's smooth, as long as you prepare yourself and the family and the patient to it properly. If you do that, it's just like just hoops in the road that you just as soon as you pass it, things go back to stable condition you.
Rima Kamal :Just as soon you pass it, things go back to stable condition. What I understand from you, dr fahad, is definitely that there is multiple stakeholders involved in this journey on the patient side, on the caregiver side, but also on the health care professional side. So certainly many challenges that also then come on top of the developmental challenges than that are specific for each age category. So that's really interesting and, I guess, a big challenge also for probably many healthcare professionals who haven't encountered a lot of spina bifida cases. Going back to what I said initially in the intro, I cited a number 200,000 children born worldwide with spina bifida. Of course this is only an estimate because we don't really know the true prevalence of the condition because many cases go unreported. But all this to say that spina bifida is, then, not as rare as some people seem to think, and I even understood that some medical professionals find themselves not ready to deal with this condition or the challenges related to this condition because of lack of knowledge about the condition. Do you second that? Yes, I do.
Dr Fahad Alyami:Knowing that those children sees. I'll just mention the specialties involved in this children care to see how complex is this journey. So neurosurgeon they're the first one to see these patients because they have to operate in the first 24 hours of life. Pediatric, urologist, pediatrician, because they have to deal with constipation and emptying issue of their stool. Gastroenterologist or pediatric surgeon the same thing with the constipation. Psychologist, because the family needs support. Psychiatrist, because some of these patients and family need support. Uretherapist. Nurse practitioners, admin support mainly for coverage and stuff like that. You can imagine the number of if this child needs to visit the hospital to see every one of these specialty. For a child who's uh sometime cannot not easy to transfer the child back and forth and they're staying at home. So what's one of the main initiative that I would say uh, it's one of the positive thing and milestone of spina bifida care is the establishment of spina bifida clinic and for the last 10-15 years this is well-established, well-described, well-published topic about that having one clinic where the child comes, where the family see all these specialty at one visit.
Dr Fahad Alyami:Orthopedic, because some of these children will have issue with their legs and they might need to be released with Botox or surgery. Neurosurgeon, because sometimes they need to have to release the cord later on as they grow. Pediatric neurologist they might need to operate. All these specialties has to collaborate. They do this in one. It's like one big room in the middle where they five rooms in the side where they rotate and see and the plan is complimentary.
Dr Fahad Alyami:So not everyone make their own decision without taking into consideration difficulties or others' opinion about the child care. So having Spina Bifida Clinic, I think it's one of the main positive milestones in the management of Spina Bifida and I think a large number of hospitals established such service, even though not all of them. But if they didn't and we have healthcare practitioners listening to this broadcast, didn't I? And we have health healthcare practitioners listening to this broadcast I think this is a very good initiative toward the best patient benefit and best patient care. We really support such move because it's easy for the family, easy for the caregiver to put the plan together and it's one visit where all the plan gets connected together as one piece and carried out to the child. Especially sometimes if you have to break bad news, if other specialties need to be on board that are not part of this group, it makes it easier for the family to understand, to accept and also to feel safe that all these health practitioners in one room talking about my child to decide what's the best approach.
Rima Kamal :So this one-stop-shop expression, then, would apply here One clinic with a multidisciplinary approach with different specialists then on board, and do you see this for both the pediatric sort of care and for the adult care? Is this a vision to have for both?
Dr Fahad Alyami:Classically it's mainly for pediatric but it can be carried out to adults. But in adults usually those kids become an adult and independent. They want to go to their own appointment. They don't want the family member to listen to their future needs. That they may feel shy about, but it's still an option, even though this option is not well explored because we are struggling with the transition of care. We still have issues internationally about transitioning those patients to adult physicians mainly urologists, neurosurgeons and things like that because the patient doesn't want to go to the adults and also some of these physicians are not familiar with the condition. If they have procedures done, they're inheriting patients from somebody else. If the records are not familiar with the condition they have procedures done, they're inheriting patients from somebody else. The records are not properly transferred. So we still face transition of those children to adulthood. So I think future role, when that transition has become smoother, is having such complementary, multidisciplinary approach, even though it can be done. But we still face issue with the transition.
Rima Kamal :And I'm going to pick up on that, the transitional phase between pediatric and adult virology. How can healthcare professionals contribute to making it more successful, and how can perhaps caregivers as well do their part to make it easier on the child? Any advice?
Dr Fahad Alyami:Yes. So something started recently, over the last five, ten years is a subspecialty, for example in urology. It's called transitional urology. It's basically they train with pediatric urology, they train with the adult reconstructive urologist, so they acquire both experience and they're the one who will be continuing the care for those children. It's called adolescent or transitional urology. It's becoming one subspecialty.
Dr Fahad Alyami:It's like somebody deal with stones, somebody deal with cancers. Now there is someone who's dealing with just for those conditions. It's congenitalism. It's basically continuing care for children with congenital conditions, specifically in urolog, and that can be applied to all other specialties that are related. So creating such training combined, both adult and pediatric, is one thing. Having channels of communication between adult and pediatric, because if the adult urologist is not familiar with the specific procedure they can collaborate together to do it in an adult patient. So having good networking with the pediatric urologist who does have the interest to continue the care for those children. Also, having a hospital administrative push to such multidisciplinary approach is also positive because it does reflect in the patient care and reduce costs in the healthcare system on the long run if they establish such a unit.
Rima Kamal :Very interesting and, I hope, also key takeaways for many of our listeners out there. I imagine, of course, the quality of care, the structure of the healthcare system, also differs, just like, of course, we talked about when it comes to spina bifida. You have the prenatal care in some countries which enable you to detect. You may have the transitional care, but it's definitely wonderful if we can aspire to having that because, as you point out, this will also cut down on the costs of healthcare and the long-term benefiting, of course, the patient. Dr Eliyemi, I want to go back to the bladder management that you talked about releasing the pressure, alleviating the pressure on the bladder. How do you help caregivers in the early stages, as children need support and cannot perform catheterization by themselves? How do you support the family in sort of getting on board with that process, in choosing a catheter and in sort of going through with that?
Dr Fahad Alyami:That's a good question, because sometimes saying that you have to do X or Y intervention to your child is something we throw and we expect the family to do it. So I think we have to explain the importance. This is one. So explaining the consequences if we didn't do this and that this is the possible high likely complication that can happen, mainly worsening renal function, infections, stones or even unable to be dry in the day or night time this is one. So proper explanation is one. Two is having somebody who's dedicated, who sits with the family, explain the procedure itself and show the feasibility. Having videos to demonstrate such how easy is this intervention. Mainly the catheterization itself, explaining the type of catheters, explaining the things like troubleshooting if this and that happens, you can do this and that Having a hotline where they can communicate with if they have difficulties, they can call someone to ask for help Then we have to start gradually.
Dr Fahad Alyami:That means we cannot just say we don't wait for the kidney function to get worse. We have to start the catheterization today or your child is going to go through dialysis. We don't do that. Catheterization today, or your child is going to go through dialysis. We don't do that. We always see indicators that help us to predict that this is going to happen as we continue. So we have to start this process early on, when we start to see stretch in the kidney, which we call hydrophoresis or urinary tract infection, where the kidney function mainly the creatinine start rising slowly with the help of our pediatric nephrologist. If we see those things, we have to at least put the alarm system to the family that we really have.
Dr Fahad Alyami:We talked about this before. Now it's time. So they need to hear it again and again. Even if they don't need it now. If we don't mention it to them till the day that they need it, it's a must. They will resist or they will not accept. So we have to prepare them. They. They have to listen to this and knowing that, the management approach there is two schools of thought.
Dr Fahad Alyami:One some pediatric elders start the catheterization as soon as the baby is born, regardless of any changes, because they know the type of condition from imaging and from neurosurgery consultation that those children will not empty the bladder properly, which is one way of doing things. The other approach is the proactive we wait for changes, but we pick them early and start. So depending what your practitioner follows, what school and what and this has to be explained thoroughly with the family in the clinic that we might need to do that, but we'll wait for that. So they have to be on board of such uh, two schools of thought.
Dr Fahad Alyami:Uh, so having a dedicated urotherapy lab, it's another one aspect that we always depend on having a nurse who really understands, who has sat with the family again and again, who has contact with the family and also can give phone numbers for family, who went through this again and connected them with this family to see how easy, how was the journey? Was it difficult? Having support group, having support of pediatric, neurologists and other specialties All these are steps that we have to take in consideration. We don't expect the family to do something just because we told them that their child needs it. So we have to prepare them, we have to support them and we have to continue with them throughout this journey.
Rima Kamal :Complex journey indeed, and I feel for all the parents and the caregivers out there. I'm a mom myself and I know how difficult it is to be a parent, let alone being a parent to a child with a congenital condition. So definitely a lot of respect for all the parents out there who do this every day. But, as you point out, Dr Fahed, a lot of the sort of preparation, paving the process for that lies on your shoulders as healthcare professionals. The multidisciplinary approach you talked about and I think that is really key it emphasizes the importance of that. You mentioned some of the complications that could arise if you fail to alleviate the pressure of the bladder. I'm going to ask about the typical complications that arise from a neurological perspective in children with spina bifida if bladder management is not optimal. What would these be?
Dr Fahad Alyami:So the function of the bladder is to store urine and to empty it and we know that kidneys produce urine to get rid of toxic material from the body. Normally the urine goes from the kidney to the ureter, which is the tube connecting the kidney to the bladder, then to the bladder, then to the urethra, which is the urine passage. Anything throughout this process can make this emptying not good, can affect the kidney, because either can cause back pressure in the kidney or can cause toxic material stays in the body longer if the kidney is not functioning properly and that can create also what we call stasis, which means the urine gets concentrated and comes from stones or infections. So you could have urinary tract infection, which can be severe in some of these conditions requiring admission and IV antibiotic infection. If it happens again and again in the kidney, it can affect the kidney function in terms of scarring, kidney function, in terms of excreting all the toxic materials. So your kidney function can increase if you don't empty your urine properly.
Dr Fahad Alyami:Dryness, mainly continence, so to be dry, especially if you reach age of social dryness. If your bladder does not have the control, then you will leak when it reaches capacity, or if your bladder is too active because it's what we call neurogenic. That means it contracts on its own. You would leak through without having control of that leakage. Leaking does not mean you're emptying. That might be reaching your capacity and that's why you're leaking. Or maybe your bladder is just deciding whenever it wants to contract. So dryness and incontinence is the key aspects, mainly from a quality of life point of view, especially for older kids if they're not wearing diapers, all these consequences that can affect. We look at four priorities Kidney function, prevent infections, prevent consequences mainly like stones, and also dryness and continence. These are the four aspects. The first one is more important kidney function than the other comes and if you fix the first one it's a continuum. The other three can be reduced significantly.
Rima Kamal :I understand, dr Fahed, that even though you are sometimes born then with the congenital condition of spina bifida, you can go on to have a fulfilling life, in spite, of course, of the many challenges that come with the condition. Do you have any sunshine stories that sort of emphasize the importance of good quality care on how the prospects of a child's quality of life could change?
Dr Fahad Alyami:Yes, so definitely so. Spina bifida, it used to be like I wouldn't say lethal, but more close to lethal condition, especially when they were used to get severe infections. So now we have better antibiotics, we have better care plan, so those kids live long like, similar to the normal population. This is one. Now they start having kids, so those girls can have pregnancy. They might need special consideration when it comes to time for delivery, so they have to be counseled. They have to deliver a place where there is a urologist who know how to deal with those conditions. Because if they have operation done early in life mainly if they will make the bladder bigger by taking a piece of bowel, which you call bladder augmentation, that will be just in front of the uterus so they have to be dealt with. A special care in terms of when we do a cesarean section, as we do not recommend vaginal delivery, they need a special care. A urologist should be there to avoid injuring of something that we fixed early. This is one. Two, the type of care of postnatal, mainly for the care for the mother after born and also for the baby and what are the chances of their future baby having such condition. This counseling need to be done with the geneticist in the hospital For male. They could have normal erection, but they might need some sort of help in terms of medication, injections or sometimes procedure to make them functional. Some of them will not be able to ejaculate and they need some special tools to help them to be able to ejaculate and have children, either through IVF support or even regular way of intercourse.
Dr Fahad Alyami:So there is success stories and we see them regularly and we keep hearing that do you know, ex-patient now she had a baby. Oh nice, because we tend to know this family and those patients very well and they get attached to us. So even this, some of them would invite us for their weddings and things like that. It's very encouraging and very rewarding seeing those children and those family, because I give the credit to the family, mainly father and mother, because they're the one who made this success.
Dr Fahad Alyami:It's not us as health care practitioner, we just paved the way. We paved the way for them and also support them, but they're the one who did it and we give credit to the child himself, because he reached the age that he's independent and he's taking care of himself, he has a job, he has a life, he has a wife, he has children. So it's very, very rewarding journey and I cannot express it enough. It's very rewarding because now they tend to have close to normal life and now society is supporting them, giving them some extra exceptions and things like that to help them to fit in the community. They have jobs, they have life. Very nice and very rewarding journey. We're happy to be part of this and I'm happy to be a part of this episode because we have to share success stories. It's not all negative. We're here to share good knowledge and we share positive feedback and positive impact of care of such children and how it reaches and how it pays back.
Rima Kamal :This is beautiful to hear, dr Farhad, and really makes us end here on a high note. I think it's extremely rewarding to see how optimal healthcare, how advances in medical science and technology has allowed for such amazing opportunities and expanded quality of life as well, for so many people out there. Before we end, dr Fahad, I want to ask you if you have any last takeaways that you want the audience to retain from this podcast episode.
Dr Fahad Alyami:Yes, definitely so. One. If you have a child with this condition, you have to ask questions, take the time to understand the condition, because understanding is, I would say, the main step of having to clear your mind, to clear the wave in terms of care. Why would your child need this or that? So ask questions. So ask questions. Please ask questions, and also make sure you have time to write them down before the visit. Write them down after the visit if you thought it was something.
Dr Fahad Alyami:Have a point of contact, and we tend to give them point of contact. Stick to your appointment, because those appointments are very important and key steps in the management. Talk to to others who have similar conditions, because now there are support groups and just ask in the area where you live if there is such a support group and we tend to connect them together, but as it's done mainly by patients to patients. Sometimes we're not part of this, but we participate in their events, because spina bifida tend to have a spina bifida day, where they have a social event where the kids get together, the family get together, share the success story, talk to each other and listen to each other. So have your own community Also close support mainly family members other than your family, because you might need somebody to support you in the first part of this journey, especially if you're a single mom or single mother or single father.
Dr Fahad Alyami:Too many challenges but you have to make sure you find the best, what fits you. If you want others to help, you ask for help If you feel comfortable without others. It's a journey. We try to make, as a healthcare practitioner, this journey easy, but it does take part of your time. So I really, really thank the family of spinal cord patients because they're the ones who help those child to live the best and also help them to live longer. So I cannot thank them enough and I thank them for letting us to be a part of this care and this journey. It is a journey and it's a very rewarding journey as long as it's done properly. So very happy to be a part of this podcast and hope we help to brighten the horizon and explain and make things and give positive feedback and positive info.
Rima Kamal :Thanks a lot, dr Fahad. I love the fact that you pay a lot of credit to the parents and the caregivers out there. I do hope that many of them listen to this podcast episode and retain the key messages and the advice that you have also shared with them. You've emphasized the importance of early detection and management to reduce complications and decrease symptoms. You've also emphasized the importance of the multidisciplinary approach, the one clinic approach as well, and the importance of transitional care as well, and these are also important aspects to take into account that we've also flushed out a lot during today's episode. So once more, dr Vahid, thank you so much for sharing your valuable knowledge with us today, and we certainly hope that we get to host you more times in the coming future.
Dr Fahad Alyami:Definitely, I would be happy to do that and thank you for this opportunity. I'd like to thank all the supporters for such podcasts and hopefully we spread it out to our patients too. We hope to give the patient the best care and I'm happy to answer any questions in the future, if any, through my email or even through any other social media platform for the family who needs or ask questions, and thank you again.
Rima Kamal :Thanks a lot, Dr Fahad. Thank you.