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Uh, greetings to everybody. And uh thank you for joining the Zoom Academic Meeting of the Department of Pediatric Surgery in East London, South Africa. And I welcome you all. Uh today we are really honored to have a talk on spina bifida. What do pediatric surgeons need to know by my very dear and close friend, Doctor Santosh Kar Merker. And our association goes back quite a long time in the late eighties and early nineties when we trained together in different institutes, but in the same big city of Mumbai, um uh for, for pediatric surgery training. And um I have been following Doctor Santos's career and I've followed his excellent work on spina bifida. And that is why when this topic came up, there was no other expert to invite to give us a talk about uh this topic. And uh doctor Santosh is currently a consultant, pediatric surgeon in a very big and well established and well recognized center of excellence, which is called Lilavati Hospital in Mumbai. Uh and he has been there for last 20 years. Uh as I said to you, he did all his uh education and training in Mumbai. He worked in two different big hospitals as a full time consultant before entering into this private hospital. But I think he's so deeply uh uh uh dedicated. He, I'm sure he's working like a full time doctor in a private hospital because he also has a training facility. And he and his team have trained at least 15 pediatric surgeons who are uh well settled and doing good work all over the world. And he has been a visiting fellow in the West and, and uh in, in Europe and in America, he has been the past secretary of the Indian Association of pediatric Surgeons. And he will also mention to us about the Spina Bifida Foundation, which is doing great work all over India. Um and he's a founder, trust you of that Santhosh. Uh without further ado, I invite you to give you a talk. Thank you uh Melin. Before I start sharing my s uh screen and slides, I wish to thank me who's been a very, very dear and close friend since the time he was in Mumbai. And it's always a pleasure me to uh associate with you and, and it's an honor to be uh called to give this lecture today. I'm also happy to meet uh Doctor Lazarus go who also we, we spent some short time together in India many years back, but I think we struck a call them. And since then, uh the we've not met too many times, but it's a nice thing. Nice feeling to meet all of you. Uh Let me share my slides. Give me a second. Ok, so I hope the slides are visible. Yes. Are you able to see the slide? Yeah. Yeah, the center slides are nicely visible. Sound is good. You can carry on. Thank you. Ok, great. So as um me said, one of my major areas of uh practice now and expertise is, is the care of Children born with spina bifida. And and II very strongly believe that the pediatric surgeon has a great role to play in deciding the outcomes o of of the uh treatments that we give to these Children. And so uh the talk is going to be the subject is vast because uh spina bifida has requires multidisciplinary care. But I think a large section is also handled and needs to be handled by pediatric surgeons, neonatal surgeons and pediatric urologists. Who of course in most countries are pediatric surgeons. So we are gonna look as quickly as we can, we cannot uh go into details of many clinical aspects. But look at some of the uh important things that as a pediatric surgeon, we need to know and we need to do and also overall view of what is spina bifida. So to start, I mean, neural tube defects comprise mainly of three entities. And phal which is about half the number of cases. You have a small percentage of cases with encephaloceles and then of course, is the remaining half which is spina bifida. So this these three entities uh largely uh comprise, I mean, make up the caseload of neural tube defects. Anencephaly is of course, one need not think too much about it. It's not compatible with life. But do these, these Children with anencephaly can live for a few days. And here's a picture of a family who wanted there to have a good photograph with their an Catholic child who survived a few days. So attitudes about how we look at some of these complicated birth defects do really matter as when, when we uh when we talk of their outcomes, a lot of outcomes depend on the attitudes that we all have talking about prevalence. Um in India. Currently, neural tube defects are the most common birth defect and we have an incidence of more than four per 1000 births which translates to about 40,000 cases per year of spina bifida, South Africa. The incident as mentioned in the recent literature is about two per 1000 which also I believe is high, anything up to one and below one is the uh accepted prevalence rate and which cannot be prevented by folic acid but anything above one per 1000 all those birds can be prevented by folic acid. As I said, each aspect of these uh of of ne defects, for example, prevention can be a talk by itself, but we don't have time to go into details of every little aspect. So, so forgive me if I'm going to run through some of the issues, but I will highlight what is important as far as treating these patients is concerned. So, so this is a slide we all are familiar that folic acid given in good time, periconceptionally can prevent up to 70 to 80% of cases of folic acid preventable spina bifida. OK. So this is an important slide Again, spin when one talks of spina bifida, it is all these things that come into the picture. And of course, you can take several lectures on these topics. But the the uh the things mentioned in blue are some things which I feel as pediatric surgeons we definitely need to know about and understand. So in that there is prevention, antenatal diagnosis, outcomes, fetal surgery, which is again in becoming uh comes under the purview of the pediatric surgeon, perinatal care, closure of the back. We need to know about hydrocephalus and maybe even be able to put in VP shunts, bladder and bowel incontinence. Absolutely something which pediatric surgeon, pediatric urologist need to uh be capable of uh managing because nobody else does. Then of course, uh pressure sources and a holistic view about the care of these Children. The other aspects are important as well. But uh I'm uh those are better handled by other specialists. So there's a whole lot of things that management of spina bifida requires which are uh which are to be tackled by pediatric surgeons. Another very important uh maybe concept to realize is that a good outcome of the treatment of spina bifida is, is, is a multidisciplinary in nature requires many, many specialists, many players and it's like an orchestra which has to work in tune with each other. If you want to achieve success in the management and outcomes of spina bifida and in this orchestra, you have many players, you have the pediatric surgeon or the pediatric neurosurgeon doing the back closure, putting in the VP shunt, then the orthopod doing the CTV incontinence being managed by us, augmentations and some accessories in the care of incontinence like the metro procedure. The mace operation also required in the orchestra is is support groups. You have to support these families medic socially when all this treatment is going on. And a new player on being in the orchestra is the fetal surgeon which again in most centers doing a lot of fetal surgery for mcs is the pediatric surgeon. So if you ask me who is the most important player in this orchestra, who is the most important person, it's none of these. It is the conductor of the orchestra and it is my firm belief that you know, when you're looking at the long term care of a spinal B in a child from birth till at least the child becomes an adult, then there has to be one single conductor of this large orchestra of spina. If this conductor is is not there, then the care of these Children can go haywire, you can have the backs closed and the we put and that's it. At the age of 910, the child still may be wet and soiling and leaking. So I think the conductor has to remain constant. And I believe that the best person in this orchestra to play the role of the conductor is probably the pediatric surgeon because many a times it's the and as a newborn with spina bifida, the pediatric surgeon is called to start to give his initial opinion. So that understanding then it is continuous scare to be looked after by one specialist is I think very important looked after means overseen by one specialist. So that was the first message. The other thing is that there are many things that decide how these Children are going to be treated. And in this context, being attitudes of the family, the doctors, the school teachers, I think the attitudes are very important. We can't go into details of these, these issues. But your moral values, ethical values also sometimes come into play when you start treating Children with severe disability. Many a times many doctors, especially in a country like mine are not aware of many of the uh operations that can be done and the quality of life that some of these Children, not some maybe almost all of them can lead. They are not aware and therefore their attitude at times is negative towards starting proper treatment for these Children. So I think when you counsel a child at birth or family with a child with a large meningocele, maybe with uh paralysis, your attitude towards what can this child become is very important and which sets the tone for further treatment and the silver lining to this so called dark cloud of spina bifida is that if properly treated, all of them must have normal I QS because their brains, their brains are completely normal. A little bit of arnal malformation will not affect IQ and they can become doctors like you and me. So I think that's the big silver lining to this so called dark cloud, which we need to keep in mind. And let me run through a few examples of being some of our patients who have, who are born with spina bi underwent all their surgeries back shunt them maybe shunt revisions. And here is once a child, he can't walk, but he's a uh a gold medalist swimmer. Another one who's on wheelchair. She was called by a big famous music reality show as a motivator. Another girl who is an athlete who's a weightlifter. Two more ladies all have both of them have undergone incontinence operations, augmentations, metro of mace. And recently during the pandemic got married and have become mothers of normal Children. Our ex president of the, of the International Federation is Doctor White Ford, a pediatric geneticist from Glasgow, born with spina bifida hydrocephalus. It's not just in the west, but in India, another lady born with spina bifida hydrocephalus works as a senior. It professional has recently given birth to her second child. This is a picture with her first daughter and she now has another son, another famous spina bifida person, the first lady head of Department of neurosurgery in the US. So these were some slides just to tell you that, you know, in spite of being wheelchair dependent, you can, if you have the right attitude to treat these Children, their lives can become productive, they can become independent and they can become pediatric surgeons or neurosurgeons themselves. So I think that's message number two is that you should have the right attitude while treating these Children. Let's run through some of the clinical aspects of spina bifida management. So if you can't prevent it, then you need to diagnose it in utero. And we all are aware that the anomaly scan is the best way to diagnose uh Meningomyelocele or a spina bifida. And being sometimes the telltale signs are in the skull, that is the lemon sign and banana sign. Um So if you diagnose a fetal meningocele, then what is the state of the art treatment that you would offer? Well, if you have fetal surgery being done in your country in your city nearby, then today, the most uh ideal option would be to offer fetal surgery for these Children with or for these fetuses who have a bening of ice. And of course, no talk on fetal surgery is complete without paying our respects to Doctor Harrison who was the founder of fetal surgery uh in, in the world. And so whenever you talk of surgery, you have to acknowledge his role. But since the time he started fetal surgery, it's been a while and now many centers across Europe, across the Americas in Singapore in Japan do offer fetal surgery. We do not do fetal surgery in India yet there are some centers on the verge, we may be able to start fetal surgery soon. And uh uh but I don't know what's the situation in South Africa. Maybe you can tell me at the end of the lecture. But fetal surgery has been proven to being extremely useful for the outcome of Meningomyeloceles. The incidence of hydrocephalus is less, it reduces the reverses the arnold malformation. It is now also proven that there are, there will have, there will be better neurological outcomes. On the flip side. They require more careful monitoring of the mother in the vicinity. She can't go out of the town to some other city till the birth of the child. So closer monitoring of the mother who has undergone fetal surgery. Incidence of prematurity is high and therefore these chi Children after birth will require longer and ICU stays. But then fetal surgery is probably the uh option, first option to offer. We are talking of an ideal situation where it is available just pre pandemic. In 2019, I spent some time in in the world's leading center where maximum number of fetal MMC repairs are done that is in, in Poland and the person you see here, Agnes is the first female fetal surgeon in the world and does a large number of MMC repairs, fetal repairs. So we wanted to start a collaboration between her center and ours. But then COVID put paid to all the plans and we are now hoping to reestablish this collaboration sometime soon, maybe this year or early next year, some pictures of fetal surgery mapping of the placent to opening of the uterus and then you see the bubble of the Meningomyelocele delivered and then it is operated just like we would do postnatally. Of course, the tissue and the uh consistency of the tissues requires a little experience uh to, to be uh to get the feel of those and to be able to do them, you know, uh uh properly. But the principle, the technique is the same. Um ca can we start this in a country like India? We absolutely can. It's not costly. We have all the expertise that is needed. Only thing is to be able to, you know, um develop up a good fetal surgery program and to get uh patients to agree for the operation. So we are, we were on the verge of that before the pandemic. And I am, I'm hopeful that we will be able to embark on this new, uh, path, uh, quite soon. And of course, you will, uh, enlighten me about the situation as far as fetal surgery is concerned in South Africa and Africa in general. So prevent it best thing to do if not diagnose it in time, antenatal, do fetal surgery wherever it's possible. But if you don't and if you can't, then a child is born with an intact spina bifid lesion, it may be open, it may be closed and there are various types of these lesions. I recommend this book to all of you. Maybe many of you are already gone through this. But then if you haven't, then please study this classification, which is probably the most um recent and the best way to classify all the lesions of spinal dysraphism. And if you uh uh go by this classification, repairing these and the principles of repairing these lesions become much easier to understand. As I said, no time to go into details, but this is highly recommended uh classification to study. Um OK. So these are timelines in the treatment of spina bifida. I'm just gonna skip a couple of slides, we will discuss them as we go along. And so coming back to the back lesion again, if you have a basic understanding of the morphology of Meningomyelocele meningocele, then in spite, I mean, I irrespective of the size of the lesion. Most of these lesions are predominantly extraspinal and a pediatric surgeon is completely capable of very successfully repairing these lesions. Even if they are big and seemingly complicated, we can use dura substitutes fibrin glue, no big big deal. Um And and most of them can be done by pediatric surgeons with some knowledge of the repair of these lesions. And here is a child with a big lesion repaired by me. So many years ago, she is now in college and studying clinical psychology on a wheelchair but is doing very well. And these were her, her pictures when we closed her big back lesion. As far as lipo meningo myeloceles are concerned. They are sometimes tricky because many of them may have a large intraspinal component. And so the the amount of intraspinal component and the complexity of that intraspinal lesion. Um As far as I am concerned, my decision to call in a neurosurgeon or do it jointly with a neurosurgeon depends on how complex is the intraspinal lesion. Remember that they all don't need to be operated at birth sometimes as a spina bifida specialist, you also have to tell neurosurgeons what not to do. Many neurosurgeon in younger Lord will immediately operate on a lesion like this at birth. Certainly not required. You can give it time, see how things are evolving and then operate. So um that's about lipomeningocele coming to the next operation that is required to for many patients is the VP shunt, which if hydrocephalus is going to develop, it will develop in the first six months or so. And if you diagnose and recognize it in time, you will do a shunt operation to manage the hydrocephalus. Again, some something which can be very easily learned and very easily done by pediatric surgeons. And uh the uh the neurosurgeons probably find it much, much more difficult to put the peritoneal end in the peritoneum than the ventricle end in the ventricles. As far as pediatric surgeons are concerned, I think putting in the ventricle and in the ventricle is anyway blind is it can be done very easily. And as far as the peritoneal and well, who can be better than pediatric surgeons. So again, mentioning this not to uh not to play down any specialty. They, of course, all specialties are required to treat these patients, but just to encourage a lot of pediatric surgeons to start doing the back closures and start doing the shunts. I think we can handle newborns and infants much better. Third ventriculo uh uh third ventriculostomy ev was operation popularized by Doctor Ben, who I have been uh regularly in touch with a good friend uh via our associations with the Spina Bifida Federation. And he is the one who popularized this uh again for by his work in Uganda, which is Africa. So I'm I'm sure the ETV procedure is done more widely in your part of the world than mine. But again, this is only for selected cases of spina bifida with hydrocephalus and may not work well or better than a patient if you do it in all cases. So that was the back lesion. Then, then in the first few months of life, the hydrocephalus. Similarly, in infancy, the orthopedic surgeon will treat the club feet. And again, it's quite easy when you treat them right at the beginning. Before things become rigid, you can manipulate and with the man maneuver and cure almost all the city of majority of CTV. S again, as a spina bifida expert with a holistic view and a basic or a a uh adequate understanding of the various problem. These people have. These Children have your role is also to prevent sometimes the overenthusiastic orthopedic surgeon because congenital dislocated hips in flare hip joints in paralyzed hip joint do not need to be corrected if they are corrected. As soon as the child plaster is removed, uh most of them will dislocate again. So as a pediatric surgeon, as the conductor of the multidisciplinary orchestra, you have to tell some instruments to, to not play out of tune. And, and that's the role I see myself as a pediatric surgeon who's, you know, looking at the care of these Children in a holistic way. Again, a much ill understood and over enthusiastically treated condition is the tethered Court syndrome. If the, if you have closed the back lesion and this child goes to a neurosurgeon say at three years, four years, he or the neurosurgeon will do an MRI for sure and interpret the low lying cord as a tethered cord. And many a neurosurgeon will say that, oh, it requires detether. Absolutely wrong. I have seen so many such Children, their neurological deficit has worsened by unnecessary data, tethering operations. So the dictum is then tethered Court syndrome is a clinical diagnosis. If the neurological deficit is I in worsening, if there is new neurological deficit, then you make a diagnosis of TCS. It is not um radiological diagnosis, it is not a urodynamic diagnosis, it is not a electrophysiological diagnosis. All these are done and it is and uh uh the patient is labeled as a tethered court syndrome case and many a times operated with a lot of harm being done. So that was another clinical issue of importance. Then uh we come to something very much on on on our side of the court that is incontinence management. And here many pediatric surgeons probably do uh undertake management of incontinence, but I don't know how many are doing augmentations. Metro off and mice. My strong belief having visited centers across the world, whether it's Europe and UK or uh Poland or Belgium or is that surgery for incontinence is highly under performed. It it's needed in many, many more cases than, than is done. Of course, the goals of treating incontinence are known to all of us. We need not go into these details of each for lack of time. Here's a list of things which you want to do or achieve uh while treating the incontinence and um treating incontinent successfully is a life-changing operation is a life-changing thing. These Children who are dent shy, you know, with low self esteem, become confident, Children become outgoing after they are made continent. So I think treating incontinence me successfully matters a lot in improving the quality of life of spina bifida, Children and adults. And um as far as treating incontinence is concerned, of course, we all know we can't make them uh completely normal like anyone else who can avoid that uh when they want and stop and know. But we aim to make them socially continent. The landmarks in the non surgical management of urinary incontinence again, C IC known to all anticholinergic medication, we all know. And then there are two important, one was this study by Stuart Bower about save bladder pressures and why we need to maintain low bladder pressure. Uh That was a landmark in the understanding of management of incontinence. And then one lady Carla Urin said that if you manage them medically well, then surgical augmentation is not required and I beg to disagree with her. Um I first met her in 2006. We had a, since then, we have known and been in communication, but now I tend to feel that surgical um surgery for incontinence management is uh very important and required in many cases. So broadly, there can be three approaches to the management of uh in urinary incontinence in spina bifida. And then these, these are what is practiced in many parts of the West Europe or USA is early intervention. As soon as a child with Meningomyelocele is born then early in infancy, you start teaching ci starting anticholinergic do the urodynamic test in a six month old, eight month old, 10 month old. And I call that earlier, I used to call it proactive, which is a nice uh word to say. But now I tend to call it overactive. Most Children with gross incontinence do not require or benefit with this early in invasive Ci CS and anticholinergics and U DS. The better approach which we advocate is select cases for early intervention and otherwise don't being pro proactive, overactive. But I, what I tend to call interactive and I think that's the more sensible thing to follow. Don't start C IC in a one month old, I mean, then make it a routine and then say that well, we prevented this bladder from worsening. No. And of course, the third approach, which is to be condemned is if you do nothing for years together and allow these Children to go into renal failure. And this used to happen when I was a lecturer, a junior doctor uh in the 19 nineties. And we saw Children at the age of 1213, 15 teenagers, born with spina bifida with gross incontinence, nothing done. Reflux severe infections and coming to us with endstage renal disease. So that's something nobody should advocate the reactive approach. So these are the things we do in nonsurgical care. We mentioned that let's not spend more time there. One quick word about urodynamic studies. The whole elaborate machine urodynamics is although we have it, we do it at times but not a must for successful management of urinary incontinence. I think it's overused. It's um it's uh interpretations very, it's very cumbersome, simple bedside system Mery along with um M CS and a good history is sufficient to manage successfully incontinence. In 80 90% of Children with neurogenic bladder selected cases, you may require the elaborate machine urodynamics. So it's not because we don't have access to the machine urodynamics. In my uh hospital, we have the latest state of the art UDS machines. But still, I believe that it's not required in management of most cases with neurogenic bladder with gross obvious incontinence. Um I will skip this slide goes into more details of the urodynamic things that we can understand both by machine as well as non machine urodynamics that can be a talk by itself. But then, so the difference between those who don't do surgery for managing incontinence is they accept a dry interval of 1 to 1.5 hours. And I've met patients in the west, in Dublin and in Europe. And they are, they have not been offered augmentations or um phenol and they are dry. They used to be leaking continuously with medical management, maybe sometimes Botox injected in the bladder. They are dry for 1, 1.5 hours. So according to me, a good successful social continence interval should be ideally three hours or more, two hours to three hours is, is, is just about ok. But anything below two hours would not be a very happy situation. Many families have met me who were not offered surgical option dry for 1.5 hours saying that they want their uh Children or they themselves want to be dryer for longer periods of time between two cis. So that's why the surgery for incontinence, I believe is much underperformed for various reasons. And we do won't go into all those right now. But essentially what is the surgery? It is increasing the size of the urinary tank and it is tightening the outlet. If you do these two things, then you can make them drive for three hours or more. And the increasing the size is the bladder augmentation. We all know about it. Let's not go into details. These are all the uh uh parts which I use for augmentation, some pictures of the uh augmentation procedure. I am I use the sigmoid colon, which I feel has a lot of advantages for bladder augmentation and we've done more than 100 now or even a little more. And, um, many of them, as I said, are parents themselves. They have been, uh, they have undergone this operation. They have now married, given birth to their own Children. And in some of the one or two of the uh female patients who required a Cesarean section, I had to attend the Cesarean section because they were worried about the trophin of stoma and the augmented bladder coming in the way. And I too used to feel it maybe so but absolutely not. The gravid uterus pushes everything safely out of the way. So I think that's not a big problem. And these are again some pre and POSTOP pictures. The second part of the uh continent surgery is bladder neck repair. And we know these are various the, the techniques which have been proposed uh for tightening the bladder neck. But the best thing we have found having done all these procedures except the artificial sphincter. We have done Vesico bladder neck repairs and the young bees and the crops. But now I'm uh sure that the rectus facia, anterior rectus facial sling is the most predictable and most effective bladder neck repair, which we do in most of our patients whose leak point pressures are low and we certainly need the bladder neck to be tightened during the augmentation procedure. So, here are some slides showing the sling which has been brought around the lower bladder neck. And you can see if the sling is pulled, the bladder neck closes the upper left side picture. And when it's lax, the bladder neck seems open. And you can demonstrate this as you put the sling and p pull it, you can very effectively see how the bladder neck and the lower most part of the bladder is getting tightened. So here, if you appreciate this on the slides, you can see the two here is the tightened bladder neck by pulling the sling. And of course, the Mitrofanoff is another add-on procedure extremely valuable in the management of the uh of urinary incontinence metro off. We use the appendix, sometimes we split it, we use part of it for the metro off part of the base of the appendix is used for a maze operation and we do not perform antireflux procedure and we call it the simplified maze and the paper will soon be published in the Ias Indian Association Journal of Simplified Mace. So these are add-on procedures during the continent surgery. These are the stomas of some of the patients. You can place it in the umbilicus and but most of the times in the right iliac fossa, our results where we have follow ups of 50 plus cases, not many complication stones in about two out of 15 and easily managed by cystoscopic blasting or them in a couple of patients by opening the augment and removing them again, results of our bladder, uh suspensions increase leak point pressures, not necessarily in all, but with the augment and with a little bit of resistance, the dry interval goes up beyond three hours. So there's about five minutes. Yes, almost ending. Ok. Thank you. So, these are again, results, few adjunctive procedures one can do in rare cases where you may not have achieved um adequate interval. Again, as I said, bowel incontinence, the mace operation, which we all do. I'm sure most of you know about him is extremely valuable and must be performed to make the child independent and self sufficient. As far as enema is concerned, few more issues, obesity, very important, many times neglected. And as the Children become adults, they and go into their twenties, they become obese. All these other aspects cannot be um uh missed and should be emphasized to get good outcomes of the treatment of spina bifida. Lastly, a word about our foundation, Doctor Melinus mentioned about the foundation and I must say that you know, a lot of the work that we get and we get referrals from not just uh all over India, but neighboring parts of the world as well and is because of our work with the foundation, our support groups. We have a network in about 14 states. We now have um funding from a lot of Corporates to enable us to give the best possible surgical and medical care and rehabilitation to even non affording and needy patients from poor socioeconomic backgrounds. And so, so the work with the foundation enables us to develop our uh our expertise and to see, look into all the aspects of uh uh making these Children lead productive lives. We have a helpline and every week I get three or four calls from all corners villages, rural places and the mobile phone. It's such a great thing because a farmer's daughter, teenager rang me up some months back from a remote farm in up and talking about she got the number from some orthopedic surgeon somewhere and connected with us and herself spoke to me about her incontinence and poor family. So the helpline now helps all these Children and these are all patients doing well. Many of them are grown up now. And so spina bifida uh care, I think for a pediatric surgeon can be extremely satisfying to see that you can make such a big difference to in the lives of the child which you have seen as a newborn when you were called upon by the obstetrician or the pediatrics, pediatrician to see this baby with the bubble on the back and to see if you see their treatment through. If you are the conductor of that orchestra, then your tune will be remembered and these Children will grow into happy uh adults who can be surgeons and doctors. Thank you very much. Uh Santosh uh thank you very much. I just have a few quick comments. Uh There are, there is a question which we will come to in a minute. But uh uh Colin will remember the lady geneticist from Glasgow. We worked with her when both of us were in Glasgow in 1994. And without knowing her name or without remembering her name, I always give her example as that you can do anything. Uh If you get proper help and Colin will also remember both of us were fortunate uh to assist uh a girl who is now a young lady with spider bifida and she works for an international company. She is a fashion designer for Children with special needs or, or adults with special needs and she travels worldwide. Uh She's based in East London, our town and uh she can even drive a car. Now they have modified her car so she can drive a car. As I said to you when we had a brief chat before this uh presentation, we used to do look after our Spira by, by patients for 10 years because we did repair, we inserted shunts, we looked after shunt complications and we knew our patients by heart, they knew us. So we looked after their bladder and bowel and that was probably the best because we were offering holistic care. We actually had a spider bifida clinic at that time, uh a combined clinic with pediatricians, but later on neurosurgeons started doing those. And now what we are doing is we are emphasizing on neurosurgeons and the pediatricians that please refer the Children early to us. We may not do anything immediately, but at least they know where we are and where to find us. And also um I was almost smiling when you said that you have the state of the art urodynamic machine, but you don't use it often because the simple test like ultrasound MC and leak point pressure can give you a lot of information and, and you can do a good management from those uh those uh tests, simple test. So uh we, we share that experience with you and great, we have done a few cases, uh not too complicated ones of bladder augmentations and metros, etcetera. So, so we share your sentiments. There is one question from Doctor mcguire who is a pediatric surgeon in Pretoria. She says, right, great presentation. Looking forward to your paper. What's your reason for not doing an antireflux procedure for your mace patients? Um because I've been having done this uh procedure now with more than 100 patients without antireflux, we find that there is no reflux, there is no reflux of uh fecal matter uh coming out. So uh we, we are emboldened to say that is as good and technically, it becomes extremely simpler to do than to do some antireflux procedure. And there are enough papers saying that with antireflux also, you had reflux. And there are a few papers saying that without antireflux procedure. There is no reflux in our uh analysis. Uh, retrospective analysis. We found that without doing any uh extra antireflux procedure, there is hardly any reflux. I mean, I don't remember. Out of 100 maybe one or two said there's a little spotting of, of, of the feces occasionally but otherwise done. So that, that made us, uh, write that paper. Hm. And, and Santosh, have you published your Rectus sling uh procedure, uh paper? No, no, no, not yet. Not yet yet. I think, I think that is absolutely worth uh publishing because I think most people need to know about it. The technique. Sure. And people actually maybe need to come and visit you and learn that technique because that really sounds very fascinating. Uh So uh Doctor Sabina Siddiqui, as uh I mentioned to you, she's a pediatric surgeon from Arkansas joining us. She had made a comment that it is good that you mentioned that tether co syndrome is a clinical diagnosis and not a radiological diagnosis. So you only intervene when the neurology starts worsening and not just because you see a tether card. Yeah. Yeah. Yeah. No good. That, that, that I like that. Um I think 22 comments I would like to invite. One is uh Doctor Sello Mataya. I hope he's still here. He had a bit of uh internet connectivity issue. Doctor Macha is our consultant, pediatric surgeon. Mhm uh Seller. Are you still here? I'm still here. Both. Thank you. Yes. So, so any comments? Yes. Um Thanks for the wonderful talk. Very enlightening and informative. Um I personally find it challenging because I see a lot of kids because um, unfortunately, we don't primarily do the repairs on the meningo mai, the neurosurgeons do that uh in our facility. But um, the issue I keep seeing is that they get lost of follow up because they get managed by the neurosurgeons. then they literally don't come for follow up to pediatric surgery for the bowel or the urinary problems and only present much later in life, which is a problem. So, what I've been doing recently is, um, introducing the idea once I see them at the clinic to the parents of a mace or a metro off. Um, because as an option because I find that a lot of the parents don't actually understand that eventually the child will want to be independent and there are options available. So that's what I've been doing currently in my practice and with the cities that I've seen, uh, you're still getting quite a bit of resistance from the parents. Um, but the nice thing is they actually are willing to listen and it's kind of a double sided way where I'm speaking to them and they're receptive and over time, I think they'll allow us to actually, um, give them these options. But, um, other than that, thanks for the talk. Thank you. Yeah, I've been convincing parents um uh was initially difficult also. But now I just tell them, please visit these two families in your city, talk to them about the operation about the stoma. And then if you have more questions, I'm always there to answer. So if they visit families who have undergone, whose Children have undergone the operation, then our lives become easier. Yes, absolutely. I think if they see results of successful surgery, then they, they probably fear anxiety. I is much reduced. Uh The next question, I think the last comment I'll ask is Doctor Yashoda manic. She is a senior consultant, pediatric surgeon in our team. Uh Yashoda, any comments, any questions to Doctor Santosh? Yes. Uh Thanks prof and thank you, Doctor Santosh for that really inspiring and hopeful presentation. Um Yeah. So as mentioned, we don't do the initial um spina bifida operations, but we do um the neurosurgeons do refer them to us uh later on when they have uh incontinence issues. I think they're getting better at doing that and they're sending them earlier. So they give us some time to address the issues. And I think it's uh I'm happy to say that. I think we manage them interactively like you um like you described. So I think we're doing a good job with that. But as I was saying, um we still have some resistance for the surgical options, but um we are offering it and we are keen to start doing them um, and then just fetal surgery. Um, I'm not sure who else is doing it but doctor, uh, pros, um, is one of the pediatric surgeons in private practice in the who is doing ok. Fetal surgery here. Oh, it's being done in South Africa. Yes. He's the only one I know of who is doing it. Um, and I'm not sure about the spina PDA if he's done any neural tube defects, but he has it. So, yeah, it's, it's also a hopeful area for us. Yeah. Thank you so much for your time. Thank you. Thank you. Uh Santosh uh Professor Sad, she is the president of the College of Pediatric Surgeons and he does uh fetal endoscopic surgery including resection of thoracic lesions and, and all those things I will ask him about whether he does uh myelomeningocele. So OK. Yeah. Sure. Yeah, he does it in the country. So I think we are so 111 more quick question to you. Yeah. Anyone is there a spina bifida Association in South Africa? I'm sure there must be and how much do they interact with all of you? And or are you members of the association? Uh No, Santos, I must express my ignorance. We will have to find out um I believe there must be, I don't think that there cannot be a spinal bifida association, but we need to find that out. Um And, and uh let them know that we are here pediatric surgeons, even though we don't do the primary surgery, we are there to take care of their kidneys and the antibodies. Got it. Yeah. Ok. So I think we are coming to the end of the talk. Sure, sure. Your final take home message. Uh I did a few one. Pediatric surgeons need to take the lead role from birth and be the conductors and see this, see the holistic care of these patients through at least into their adulthood. And I think that's the most important challenging task. I mean, it doesn't matter if the neurosurgeon repairs the back, but somebody, some specialists should take ownership of the entire care of these patients. Neurosurgery does his back and forgets the orthopod repairs, the CT V or some deformity and forgets. So that should not be the case. So it doesn't matter. Sometimes the conductor may be a neurosurgeon. Yeah. But I think the best uh place specialist for leading the care of these Children from birth, still adulthood, taking the help of various uh specialists along the way that the pediatric surgeons are best placed. I think that's, that's the. Thank you. Thank you. Thank you very much Santosh. And uh for those who had connectivity issues and those who couldn't join, I'm going to uh upload uh the edited video of this talk on my youtube channel, hopefully this evening and then I'll share the links so that those who could not attend uh or those who want to uh uh see it again, can, can uh can do it. Uh There is a comment here um uh in Malawi, the success of spina bifida care has improved greatly when pediatric surgeons took lead role and supported advocacy done by the local spina bifida association. Yeah, wonderful. So doctor now, both neurosurgeons and pediatric surgeons are on the board of the local Spina Bifida Association. I think that's the way it should be. That's the way it should be. Yeah. Ok. And uh so thank, yeah, thank you, everybody. Yeah. Yes. Yes and thank you. Thank you. Yes. No, it was really wonderful having you Santosh and in a month's time on the second Tuesday of July, we are hoping to have a talk on uh the shunt surgery for portal hypertension. I'm still just finalizing uh the speaker, but uh you will come to know a week in advance. Yes. Yes. No, I think both of them are just about thanking you for the doctor. Thank you. Thanks. Thanks to all. Thank you. Ok, we'll be in touch me. Ok. Yes. Bye bye. Ok, bye now. Bye bye.