Typical worries in parents of boys with hypospadias

Hypospadias though common is still unknown to the general population. When a parent finds out that their child has a genital abnormality (hypospadias) they get very worried thinking of the child’s future, which often leads to heightened parental worries. Due to limited resources which are available in the online platform, parents do not get a clear idea when it comes to hypospadias. This blog is directed to parents who have children with hypospadias, to ease their concern and improve the knowledge surrounding hypospadias and parental worries.

  1. Is surgery needed for Hypospadias? Surgery is required in hypospadias to correct the chordee, to create a urinary passage and bring the opening to the tip of the penis. The repair can be staged or single stage depending on the degree of chordee (downward bent of the penis) and severity of hypospadias. The risk of complications following surgery at our centre is less than 5%. The most common complications which we encounter are wound infection, fistula formation, diverticulum formation and meatal stenosis. An additional surgery may be required in some of these complications. Following hypospadias surgery, the cosmetic result will be similar to a circumcised penis. The meatus will be at the tip on the glans and the child would be able to pass urine in a single straight stream.
  2. Anaesthesia during hypospadias surgery: Hypospadias surgeries are done under general anaesthesia. It is important that besides a pediatric urologist, a pediatric anesthesiologist doctor is available to give anesthesia safely to children. Right from dosage of medications to managing airway is very different in children when compared to adults. Hence, at Hypospadias Foundation we have 3 skilled pediatric anesthesia experts who give anesthesia for hypospadias surgery. In addition to general anaesthesia the anaesthetist will also give an injection in the lower spine (caudal anaesthesia) which gives good pain relief to children for 12 hours after the surgery. Pain relief is our priority after surgery so that children can be comfortable after surgery and don’t remember hospitalisation as a painful episode. Besides caudal anaesthesia(during the surgery), we provide adequate pain relief with analgesics for a few days post-surgery.
  3. Pain after hypospadias surgery: Besides common surgical pain, which is easily manageable with pain killer medicines, two main reasons why children can develop pain in the post operative period are either due to bladder spasms or erections. Bladder spasms are controlled by a tablet oxybutynin which is started after the surgery and is continued till the catheter removal. Erection in the penis mainly occurs during early morning hours but can occur anytime in the day. Mostly the pain which occurs during erection is also managed well by the painkillers. The pain decreases significantly once the dressing and catheter are removed. However, penis continues to be sensitive for 2-3 weeks after the hypospadias repair surgery.
  4. Infertility in hypospadias:  Hypospadias can cause male infertility due to various reasons. They may be due to abnormal location of the meatus, presence of chordee and low semen count. The altered opening of the urethra can cause problems in ejaculation, hence causing infertility. Presence of chordee can make sexual intercourse difficult or painful. Presence of an associated undescended testis may be associated with a low sperm count. We need to understand that not all men with hypospadias will have fertility problems. The severity of hypospadias and the success of surgical repair will ultimately decide if they will be able to father a child. Hence in men with hypospadias suffering from infertility they need to get in touch with a hypospadias surgeon because getting the hypospadias repaired will increase their chances of having children.  
  5. Risk of hypospadias in future generation: The risk of hypospadias in future generations is influenced by a number of factors such as genetic and environmental factors. Some studies suggest that the risk of hypospadias may be increasing. The prevalence of hypospadias in the United states has increased by 10% from 1970 and 2000 as per the study published in the journal Nature in 2011. Hypospadias is a condition that can be inherited from the parents. If the father has hypospadias, then the risk of developing hypospadias in future generations will be 5-10%. Similarly, if first child has hypospadias, the risk in second boy is almost 5%. 
  6. Cost of surgery and insurance coverage/cashless/mediclaim: Hypospadias being a penis birth defect is classified as an external birth defect which can be easily diagnosed as soon as the baby is born. Hence, if parents take an insurance policy after the baby is born, hypospadias surgery treatment costs as cashless Mediclaim are not covered by most of the insurance companies in India atleast while in USA, UK it is covered under insurance benefits. The situation is different for some of the corporate insurance group policy holders. Some big corporates issue very employee friendly mediclaim policies which cover all medical and surgical treatments for the employees and their families. Such mediclaim policies may cover all pre-existing as well as birth defects for their employees and hence hypospadias repair procedure may be covered by the insurance companies in these circumstances.

At Hypospadias foundation, we see almost 500 children and adults with hypospadias every year. The counselling in clinic, before surgery and after surgery focussing on making the families and patients comfortable, increasing their knowledge, and solving their queries regarding Hypospadias and parental worries. While there may be information available with pediatricians or on google, it is always better to consult a specialist hypospadias surgeon to have genuine answers to all the questions.

 

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    Why circumcision should be avoided in boys with hypospadias

    Circumcision is a procedure done to remove the foreskin over the glans. Boys hypospadias circumcision The definite indications for circumcision in a child are recurrent balanoposthitis (foreskin infections), failure of local steroid therapy in phimosis and infant boys with recurrent urinary infection. Another important reason why parents choose circumcision for their child is for religious or cultural reasons.

    During circumcision it is necessary to retract the foreskin completely and check for the position of the meatus. This is necessary because hypospadias can be sometimes missed and once the foreskin is excised, hypospadias repair becomes challenging. The hypospadias variants which can be missed are glanular hypospadias, MIP (megameatus intact prepuce) variant and chordee without hypospadias. Any surgeon performing the circumcision in a child should be vigilant and circumcision
    should be avoided at all costs in children with hypospadias.

    The reasons to avoid doing circumcision in children with hypospadias are as follows:
    1. Foreskin is required for skin closure in hypospadias: Hypospadias is generally associated with deficient penile ventrally and excess foreskin dorsally. During hypospadias repair if the child has already undergone circumcision, then we may encounter difficulty in skin closure.
    2. Dartos flap from foreskin is used in urethroplasty: In any urethroplasty we suture multiple layers of tissues over the urethroplasty to decrease the chance of fistula formation. This includes local tissues and dartos flap. In children who have undergone circumcision, dartos flap is unavailable to cover the urethroplasty.
    3. Use of prepuce in urethroplasty: Foreskin may be required for urethroplasty in children with poor urethral plate and shallow glans groove. Prepucial onlay flap urethroplasty is a good choice in these children. This is possible only if the foreskin is available. Hence in children who have undergone circumcision this technique will not be possible.

    Circumcision, though a simple procedure, has its specific indications in children. Not all boys with hypospadias need circumcision, and when deemed necessary, it should be approached cautiously. Identifying hypospadias during circumcision requires surgeons with keen observation skills to diagnose the condition accurately. The procedure should be abandoned if there’s any doubt, and the child should be referred to a specialist pediatric urologist for further management.

    Do consult a specialist pediatric urologist before planning circumcision for your child if you have doubt or your doctor has told you that there may be hypospadias or chordee.
    At Hypospadias foundation, we get children from all over India and from more than 25 countries all over the world in search of cure for hypospadias. At our centre we treat adults and children after multiple previous unsuccessful surgeries. Our experience clearly shows that previous circumcision makes subsequent hypospadias repair surgery difficult.

     

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      A small complication in hypospadias surgery does not mean the end of the road: Surgeon and Family must work together

      Let me begin by saying: Hypospadias Repair surgery is not an easy surgery and Surgeon and Family must work together.

      It takes a surgeon years to perfect the art and craft of hypospadias surgery. Every single slice of the knife, every single snip of scissors, every single stitch holds the key to a successful hypospadias repair. Despite all this, sometimes the results of hypospadias surgery may be suboptimal. The reasons for this are many. Besides an undertrained surgeon or poor equipment or expertise, sometimes the healing after hypospadias surgery is unpredictable. Even after hypospadias surgery, the penis has erections every night, putting the repair under a little bit of stress. There may be minor infection, or the child may be nutritionally deficient in micronutrients leading to poor healing. Even if these factors are controlled, individual healing is still a very variable phenomenon, leading to a small rate of complications even in expert hands. In the best hypospadias centers, hypospadias complications dip to less than 5% for distal hypospadias and less than 15% for severe hypospadias.

      Any complication which happens can be disheartening for the family, the child as well as for the hypospadias surgeon. Surgeons particularly get emotionally disturbed and keep thinking about it even when they go back home and more so the surgeons who are sensitive. We as surgeons forget our 95% successes and keep carrying the burden of our complications back to our homes and our families; even the minor things haunt us. Though we may keep a strong face on the exterior, much required, inside we suffer every time something doesn’t go well. Hence, we keep striving for better and better results. Surgeon and Family must work together

      Surgeon and Family must work together

      Dr A.K.Singal, Pediatric Urologist India

      Surgeon and Family must work together

      Dr A.K.Singal during Hypospadias surgery

      Well coming back to the point- One of the most common complications of hypospadias surgery is Urethral Fistula formation. Having a complication such as fistula is not the end of the road. If the family has faith and the surgeon is experienced, urethral fistula can be managed easily with a minor second surgery in most of the cases.

      I wish to share one story sent by the parents on an email to us and without any changes. The family came to us from Pune to Navi Mumbai for hypospadias treatment. Here we go:

      It was indeed the happiest day of our lives when we welcomed our little bundle of joy; but soon after our son was born, the paediatrician informed us the baby is having a condition called Hypospadias with chordee albeit the degree of both the conditions was really minor, yet requiring surgery. The term Hypospadias was unheard of until then by us as well as seniors in the family. It was so devastating for us to know that the little one is already scheduled for the surgery – especially on such delicate place – before even he is a month old. Although the surgery was never life threatening and was elective in nature, as parents we were extremely nervous and anxious. Like every anxious parent, we too googled about the condition – which helped us understand better about hypospadias – before taking the next step of seeing the surgeon. Here in Pune, we did meet at least 2-3 paediatric surgeons (not the urologists or who specialise in hypospadias surgery). A senior doctor suggested 2 surgeries even for this minor hypospadias. Later we met 2-3 more doctors who suggested various methods be it keeping baby hospitalised for 7 to 10 days with medicines administered through IV lines or keeping the baby open after catheterization plus keeping his legs tied to each other in order to avoid dislodgement of catheter when he moves his legs; not to mention we were extremely petrified after meeting all these doctors as they were not at all empathetic not cordial. Not unexpectedly we were not convinced with any of the doctors as through google we already had understood that the condition can be treated as a day care surgery and babies are managed on oral medicines and in double diapers. Here, no doctor was talking about diaper and taking the baby home next day if not the same day. With due to respect to these doctors, we didn’t want to go ahead with the doctor with whom we were not comfortable with whatever little knowledge we have had gathered on this subject. The question of finding the right doctor was still there. Again, while googling we could get to know that there could be doctors who specialise as paediatric urologists and have vast experience of treating the babies / kids with hypospadias. Thanks to google and age of internet we found Dr. A.K. Singal.

       

      The day we met Dr. Singal:

      By the time we met Dr. Singal, our son was already 5 months old. After meeting Dr. Singal we realised why things didn’t move ahead with the previous doctors. Meeting Dr. Singal was so up to the mark as he explained the condition in detail, what he will be doing in the operation theatre and how the baby will be managed post-surgery. He was not only empathetic but also cordial and could understand what exactly the parents must be going through when their little ones must go through the surgery at very young age. His attitude was very positive. We had met the doctor we were looking for. Needless to say, we were so convinced and decided to go ahead with the surgery by Dr. AK Singal. He confirmed that both the defects would be covered in one surgery and the chances of any complications could be considered up to 2-3%. The age he suggested for the surgery was between 6 to 9 months. We took our own time to decide on the date of surgery and scheduled it when he was 14 months old. In the meanwhile, we met Dr. Singal twice with the doubts that we had. Each time he was very cordial in explaining the doubts in detail.

       

      On the day of Surgery:

      It was finally the day of the surgery. Nevertheless, we knew that the surgery is going to be for baby’s own good, yet our hearts were in the mouth. The doctor, as well the staff are so good that they would cater to every alarm by an extra-anxious and sensitive parent like me. The surgery went well, and the baby was brought back to the room. He was sleeping most of the day but when he opened his eyes I missed my heartbeat in the anticipation that he, now, would feel pain and the soreness; but to our surprise, he did not have any post-surgical pain on that day and any following day thereafter till the wound was healing. He was at his playful best by the next morning of surgery. He was kept in double diapers i.e. a hole was made in the inner diaper through which catheter was brought out and left to drain in the outer diaper. This method provides a cushion to the operated site, avoids catheter getting pulled accidently and makes it easy for parents to carry the child. Doctor suggested us to go home the next day, but we decided to continue for one more day for the betterment of the child. The nurses were so attentive and very cordial. After removal of the dressing and catheter, unfortunately our son caught the infection at the operated site which resulted in an extremely tiny fistula, which could not be spotted unless seen with the extreme care. This fistula was so tiny that the urine would come out from it in a drop or two. Later, as he was growing the urine output from the fistula grew to multiple drops.

       

      Next appointments with the doctor:

      Despite our son developed the fistula, our faith in the doctor never faded away as we were sure that doctor must have done his job with 100% care, and it was our and our baby’s fate to have the complication. The doctor never rushed and pushed us for the second surgery. He was hopeful that this tiny fistula can be healed on its own over the course of time; but the misfortune may have it, the fistula never healed, and worsened with the age by the end of year 2018. We had no choice but to put him through yet another surgery. This time as well the same protocols were followed and now our son is doing good after relatively minor second surgery.

      Notes for the parents:

      • Please do your research when your little one requires any kind of surgery.
      • Have your questions ready so that you don’t miss any of them while you see the doctor
      • Trust your vibes. Don’t go ahead with the doctor unless you’re 100% convinced.
      • Get all your doubts cleared before you schedule your little one for the surgery
      • Take a note of your baby’s food habits and arrange for them well in advance, especially if you are an intercity / interstate / international patient. Carry sufficient (or maybe surplus) supplies during this crucial time as the baby / child can be cranky due to change in schedule and nonetheless due to procedure.
      • Carry his / her favourite toys, as that can sooth them.
      • Engage them with cartoon videos
      • Most importantly, however low and stressed you feel, never show baby /child your emotions and keep the spirit high. This is a tough time which too shall pass, just hang in there.
      • Follow medicine schedule very promptly. Be on top of the pain. Be very punctual when to comes to medicine schedule.
      • Be vigilant but don’t panic, call the hospital if you are not sure what to do?

       

      Hope this story helped the families out there in some way. The lessons from the story can help both the surgeon and the family in having faith in the worst of times.

      Take care and god bless.

      Dr Singal

       

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        Dr A.K.Singal presents his work at Hypospadias World Congress at Childrens Hospital of Philadelphia, USA

        Dr A.K. Singal was an invited speaker at the Hypospadias World Congress, held at the Children’s Research Center at Children’s Hospital of Philadelphia, USA, between 30th October 2019 and 1st November 2019. Dr. Singal presented four papers on hypospadias treatment and moderated scientific sessions during the conference. His groundbreaking contributions further solidify his reputation as an expert in the field of pediatric urology, driving innovative advancements in hypospadias surgery and treatment.

        The conference saw participation from more than 150 pediatric urologists and hypospadias specialists from across the world. The conference solely focussed on hypospadias. Various aspects of hypospadias were discussed such as etiology, diagnosis, hormonal tests and supplementation (testosterone injections), surgery techniques and complications/ results of hypospadias surgeries.

        Dr A.K.Singal presents his work at Hypospadias World Congress

        Dr. A.K.Singal

        Dr A.K.Singal presents his work at Hypospadias World Congress
        Dr A.K.Singal presents his work at Hypospadias World Congress

        Dr. Singal with Dr. Long & Dr. Zaontz

        Dr. Singal presented the following lectures and papers in the World Congress:
        • Buccal inlay graft for failed hypospadias- Dr Singal showed technique of buccal (oral) mucosa graft inlay surgery and its results in failed hypospadias cases.
        • Considerations in adult hypospadias repairs- Adult hypospadias are difficult to manage especially if the surgery done in childhood has failed. Dr Singal showed innovative surgery techniques for such adult hypospadias cases for best outcomes.
        • Reimagined Byar’s flaps for staged hypospadias repairs- For hypospadias with severe chordee, it is important that the penile curvature gets fully corrected in first stage and then second stage surgery is done for bringing the urethra to the tip of penis. In expert hands the results of two stage surgery for hypospadias with severe chordee is very good. Dr Singal showed finer nuances of surgery to achieve best results to the audience.
        • Parental Awareness survey for families with hypospadias: Families of children or adults with hypospadias are often not fully aware of the extent of disease and what it means in the long run. Dr Singal and his team conducted a study of 150 families to understand about their concerns about hypospadias and their knowledge level about the disease/ surgery.

        Overall the three-day conference resulted in great mutual exchange of ideas and also helped younger generation of surgeons learn from eminent faculty from all over the world.

         

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