Hypospadias - Our experience (Warning - long almost pictureless post!)

This entire post is dedicated to my son's recent operation and some basic information about the condition that required him to have surgery. If you're squeamish, or think this isn't for you, don't worry, I wont be offended. Call back next time for regular programming! :)

So you have heard me mention about the smaller person's recent stay in hospital and his operation. This is all due to something known as hypospadias. Hypospadias is a birth defect where the uretha, the tube which  wee passes through, does not form properly and results with the meatus, the opening or hole in the penis that they wee out of, being in the wrong place.

There are varying levels of severity, each which have their own implications. Some openings are not far from the place they should be, some are further down the shaft, some are by the scrotum and some are located by the perenium. This causes them to have trouble getting their wee to go where they want it to go, which can be embarassing as they get older, and leaves some with no choice but to sit down when going to the toilet. For those that have openings further from the tip, this can also cause problems if they want children when they are older.

With hypospadias the shape of the head of the penis can be different to a penis without hypospadias (flatter, sometimes mushroom shaped) and the foreskin is not usually fully formed. Some cases of hypospadias also have a chordee. This is where the penis bends, sometimes quite noticably, sometimes only noticable when errect. This can cause obvious problems for intercourse.

The causes are unknown and there are many theories, but there seems to be an increased chance if there is a history of hypospadias in the family. The treatment is through surgery.

This is where as a parent it becomes complicated. Nobody will force you to take the surgery route, this is a choice you have to make. For the more severe cases, it could have a huge impact on their future lifestyles. For the less severe cases, it still has major implications to how they will feel and function in the future, but you do worry if you are doing the right thing. I have read many stories from grown men who had surgery when they were children and wish they never had (scarring, multiple surgeries and problems and all sorts of other things that have obviously deeply affected them), but what we had to keep in mind as a family is that the techniques and success rates have changed a great deal since then.

Surgery obviously carries risks, and some forms of hypospadias take more than one surgery. Some are discussed as only requiring one surgery and then due to unforeseen circumstances require further operations. How do you make this choice for your child?

I can really only speak for ourselves and the experience we had with Zack.

Within a few moments of Zack's birth, the midwife told us he had hypospadias. Unlike many parents, we knew what it was, so we weren't confused ro shocked. My husband was born with the condition and 2 surgeries when he was a child, in the 80's. Not all hypospadias is noticed at birth, some are noticed in subsequent checks, or when parents notice something doesn't seem quite right. Some have such mild forms, they go on to fully grown men who just notice that they have difficulty 'aiming' in the toilet.

We were referred to a plastic surgeon a few weeks after his birth to be assessed. Some are referred to urologists, some to specialist paediatric urologists. Our Doctor actually specialised in this surgery and had performed countless operations of this kind over the years. We were told surgery would be scheduled for sometime around 9 - 12 months of age. At our hospital they don't like to do it earlier because of the difficulties with anaesthetic and very young children, and they don't like to do it later because they start getting to a more active age.

Most importantly, if your son has hypospadias you must not have them circumcised before any surgery can take place. They use the foreskin in the reconstruction.

We carried on with the thought of the surgery somewhere deep in the back of our minds. When the letter with the date for surgery finally came through it started to become very real. This is the point where all of the doubts start to creep in. I was worried about the anaesthetic, I was worried about the outcome, I was worried about how well he would cope and the pain he was going to suffer. I thought of all of the worst case scenarios and started wondering if we should go through with it. His opening was just below the head, at the top of the shaft and he has no chordee, so I started to wonder if maybe he would be better coping like that. It was my husbands voice of reason and experience that broke through to me. At this age he wont remember, it will mean that he functions as a normal boy and it will avoid the embarassment he might experience at school, swimming, with future girlfriends etc. My husband's experience with his surgery wasn't really positive, but he does not regret having it.

The next decision was did we want them reconstruct a full foreskin, or just to circumcise him. My husband was adamant circumcision, I agonised over this. Unless it's for religious reasons, circumcision is not normally performed here in the UK. I started to wonder if after all the surgery to look normal, he would still be singled out as 'different' due to the circumcision. I wondered if he would really thank us for it when he was old enough to understand. There are medical thoughts behind this decision too. Having spoken to other mums who's sons have been through this, a few commented that they opted for the reconstruction, then there were problems afterwards which resulted in them having to go back for more surgery and circumcision after all. On the flip side of the coin, there were the ones who opted for circimcision, but then had to have further unforeseen surgery, and without the foreskin to work with, skin graphs had to be taken from elsewhere (usually inside the cheek). It was a tough choice. We went with circumcision in the end, hoping that this will be his one and only surgery, and hoping he's OK with it when he is older. Even now sitting at home after then event I'm unsure if we made the right choice for him, and only time will tell. I suppose as he grows, he will just be used to it being that way.

The day of the surgery was tough. Me and my husband took him into hospital in the morning. He had to be nil by mouth, which at his age is tough because they don't understand. They just know that they are hungry or thirsty. Thankfully, the hospitals are pretty good at prioritising younger ones because of this. The doctor came round to check if we had any further questions (and to get our final decision on the circumcision), then the anaesthetist to check his health, weight and any queries we might have had, then the nurse to go through his medical history. She actually asked if they'd drawn an arrow on him, and we joked that we hope they know where it is without an arrow!

He was second on the list for the day. They allowed one of us to go with him, but explained this parent would have to hold him still while they gas him to sleep. Mr Bogert said he didn't mind and left the choice to me. As much as I wanted to stay with him until the last moment befre he went into theatre, I knew I would be of no use and would be so emotional I would upset Zack all the more. As Mr Bogert walked off the ward with Zack in his arms to head towards theatre it was absolutely heartbreaking. It still upsets me now thinking back. That truly was the worst part, and the part that every parent will dread. All the worries flooded back as I sat there alone on the ward. I started to worry about things going wrong with the anaesthetic and how stupid it was to risk him for something that could essentially be boiled down to comestic surgery (It is NOT comestic surgery, but I was not rational at the time). I sat in the empty corner of the room hoping the other 3 mums couldn't see me quietly crying.

Mr Bogert came back and sat with me. He really is very good at making me feel better, and taking my mind off the worry. The surgery itself took approx 1.5 hours, but he was gone for about 2.5-3 hours allowing for going to sleep and then time in recovery afterwards.

Our assigned nurse came to get us and take us down to recovery to collect Zack together. We took his favourite blankie, and the nurse carried a red emergency bag which she assured us was just in case as we'd be on the move. I expected to find him lying groggy in a hospital cot, but when we got there, he was in a member of staffs arms screaming the place down. I was just so happy to see him, I didn't care. I do wish though, he'd seen us when he woke. It must have been horrid for him, not knowing where he was or who anyone was. You feel bad enough after anaesthetic.

I carried him back to the ward in my arms while the nurse wheeled the empty cot. Mr Boget had the joyous task of carrying the catheter bag.

Back on the ward he was inconsolable. He screamed the place down. Eventually Mr Bogert managed to get him to sleep. It was horrible hearing him so upset, not being able to do anything to make him feel better. I was worried he was in a lot of pain, but it would seem it was more about the effects of the anaesthetic. Once he had a long sleep, he seemed better. Still groggy, but not teary.

You would think this was the end of the worst, I thought it was, but it really was just a transition to the next challenge.

Our doctor prefers to use a stent in boys of Zack's age. This is a small tube that goes from the bladder, through the newly formed opening, and straight into the nappy. It is stitched in place, but does give them some freedom of movement. The stent stays in place for 7 days, but the child is allowed home after around 3 days once the doctors are happy with their progress, and once the parents are capable of changeing dressings. (This is the practice at our particular hospital. Not all hospitals are the same).

In Zack's case though, they had to use a catheter. The reason for this we were told was because he is quite big for his age. I must ask when we return for the review how size affects the choice. So the catheter is also a tube that goes into the bladder and comes out of the new opening, but it is fitted to a wider tube that is taped to the body and then passes into a bag. The catheter is held in place by a water filled balloon in the bladder, and the valve for this is attached to the thicker tube taped to the body. The tube isn't very long, so there is not a great deal of room for movement. He was put on bed rest. There really is not point in telling a 1 year old he is on bed rest.

We were warned that in theory he could pull the catheter out and if he did he could end up back in theatre, and it could affect the outcome of the surgery. It was highly stressful having to make sure that he didn't pull at the catheter and constantly untangling him from the tube. Every time we picked him up out of the cot, we had to pass the bag through the bars of the cot first to get him out without pulling. At night he would roll over in his sleep and wrap the tube around his body pulling it tight. In the day he would wonder what this thing stuck to his body was and try to pull it away. He also liked to do the rounds of the cot which got the tube twisted and tangled. When it wasn't wrapped around his leg, it was curled up like an over-twisted telephone lead.

With the catheter in place he had to stay in hospital until it came out 7 days after the operation. I was allowed to stay with him on a make up bed. It was tiring. The bed was not comfortable, he would not sleep well, when he did sleep I was worried he was tangled, and when I was too tired to worry any more, the other children were awake and crying, or the nurses were talking in the corridor or coming to do Zack's obs, and even in the few fleeting moments of relative quiet, it was too light. The parent beds had to be packed away first thing in the morning so that the staff had clear and easy access to the cots if need be.

Someone had to be there to watch Zack constantly just because of the catheter. This caused all sorts of problems from toilet breaks to less urgent thing like getting a hot drink or food and even getting dressed in the morning. Mr Bogert came in as much as he could. He took 2 days holiday for the first 2 days, then we had the weekend. Family pitched in to help with Alexandra, an then the following week, Mr Bogert's boss let him work from home so that he could be there to deal with alexandra getting ready for school and getting on the bus, then also collecting her at the end of the day. He came into the hospital on his lunch break to give me a break and chance to eat, then he came back again in the evening with the small person. It was just a matter of juggling and coping.

A few times the tape holding the tube to Zack's belly stretched and loosened and had to be replaced. The tape is super sticky and even with spray or wipes to loosen the sticky, it was sore on his skin to pull off. It left big red marks and he was very upset. Twice the actual dressing on the operation site had to be changed. It took 3 of us to hold him still enough and change it whilst keeping the catheter in place and his hands and limbs out of the area. The first time the dressing is taken off, it is a bit of a shock - there is so much redness and swelling and obviously you can still see some of the stitches too.

Because he was in hospital he had to have his obs done on a regular basis. Even this became an upsetting time for him. To begin with he just let them get on with it, but as the time wore on, he started to fight against it. He would see the blood pressure monitor being wheeled in and shake his head and move to the side of the cot furthest from it. He's normally very good at taking medicine too, but with antibiotics and two different types of pain relief, I think it all just became too much. He fought against the medicine and gagged on it. The gagging made him sick 3 times, and medicine time became such a problem that either me or rob would have to pin him lying down, whilst the nurse used a small syringe to push the medicine to the back of his throat in small doses. We then blew on his face to make him swallow. It may sound like a form of torture, but the alternative would have be IV antibiotics, and he would have suffered much more with that.

A week later we stripped him off and placed him in a warm bath to soak the tape off. After the tape came off, the nurse removed the actual dressing then deflated the balloon holding the catheter in place. The catheter was then left to work it's own way out in the water. I was told normally they just do a little wee and it floats out on it's own. Our problem was the tape and dressing coming off upset Zack again and in a panic he pulled at the tube. He was OK, and it came out, but still worrying as we've been told to keep his hands away from there whilst it is still healing. There was a tiny amount of the gauze dressing that stuck to the operation site, so we had to sit and wait while the water soaked it off.

The site was so swollen and red. It was hard to see what they've really done. Some of the stitches were visible, and we have been told may well remain for several weeks until the disolve.

Nobody really told us what to expect or what to bring. It was only by talking to other mums that we found things out and realised certain things. We took vests and trousers that are too big so that they are loose around that area. We took larger size nappies for the same reason.

I know from speaking with other people, that the way things are done from doctor to doctor, area to area, and country to country vary greatly. The best age for surgery seems to be a debate, the way in which the surgery is done can be different because there are many different procedures that have been developed over time. Some cases I have heard of have been treated as day surgery. Others have had catheters like Zack and still been allowed home (But those mum's did comment on how difficult they found this). Some use a double nappy system with the stent where a normal sized nappy is worn but with a hole cut in to pass the stent through into a larger nappy over the top (this keeps the tube clear of poop).

The best thing to do if you are in this situation is find out as much as possible from other sources, then go to your doctor for specifics for your case and planned treatment.

• Ask for specifics about your sons condition (what level, where exactly the hole is if you can't see it, is there any chordee, what implcations these things have for future functioning without surgery, what these factors mean with regards to the surgery, number of surgeries and hoped outcome, how this affects the chances of complications.)
• Ask for an explanation of exactly what they will do during surgery and what kind of dressings/catheters etc will be in place afterwards.
• Ask about the hospital policies for taking your child to theatre and bringing them back again, and also about visiting and staying with your child.
• Check about hospital meal times. It may not occur to you, but in our case they provided breakfast for me, but I had to find my own Lunch and tea. This may not seem too bad, but as Zack required constant supervision because of the catheter, it took some strategic planning!
• Ask about all the possible outcomes and get figures for your particular doctor's or hospital success/failure/complications rate. (specifically ask about fistulas - where another hole opens up; andask about strictures - where the opening tightens and can cause problems weeing)
• Ask what will be expected of you after the operation - will you be taking him home with catheter/stent?
• Will you have to change dressings?
• How long will you expect to be in hospital?
• What type of medication will your son be taking afterwards? Will this continue at home?
• How long after discharge will you been seen again?

Another thing that might seem obvious but hadn't ocurred to us is the fact that after the dressing is taken off, there is the potential for the operation site to get stuck to the nappy. This could be very sore. One mum who this happened to recommended we use a little vaseline just to stop sticking. I mentioned this to the doctor before we were discharged and as a result we were given a prescription for polyfax which is like vaseline, but has some antiseptic in. Had it not been for that mum's advice to me, I wouldn't have asked, if I hadn't asked, we wouldn't have been given the prescription.

There are so many other things you might want to ask. Like I said before, I am not an expert and I can really only comment on our experience, and hope it can help anyone else in our situation gain a little more understanding.

It all sounds like so much, and it is. It was an awful experience that I hope never to relive, but you just have to get on with it. That's what you do as a parent, you just cope, and in the grand scheme of things, there are worse illnesses and conditions that children and their parents have to deal with. I've probably made it sound far worse than reality. We still have a way to go with healing, but now 2 days after the catheter came out and we returned home, Zack is his usual lively self, the swelling has gone down quite a bit and alot of the redness has faded. We can now see where the scar is, and it's really not very big or noticable, and even that will fade with time. Zack has been through an awful lot this last week or so, but he seems to have come through it OK, and a plus for him having the operation at this age is he wont remember it.

With this in mind, we have taken a few photos and kept his get well cards. We have a before photograph, some photos of him in hospital and with his bag, and an after photograph. This may sound strange, but we will be in the position of not only telling him what happened and why, but also showing him. We believe this is important because any sons he may have will have an increased risk of being born with the condition, and also just for the sake of understanding himself (why he is circumcised, why he has a scar, and why he must keep an eye on any problems). Having been there ourselves, more information about my husbands history would have been beneficial. My husband was too young to remember properly and my mother-in-law was a bit vague (it was a while ago!).

So now we're home and the end is in sight. We wont know until his 6 week review if it's been a complete success (fingers crossed!). We have to clean with cotton wool and salt water when we do nappy changes, we're still in the bigger nappies and clothes, we have to keep his hands away from the area while he heals, and for bath times we can do as normal, just without rubbing the area for washing or drying. Air drying is better if possible so we have been told. We are also using the polyfax. He doesn't seem to be in a great deal of discomfort and is being very active. We've only had to give him a bit of calpol at bedtime. We also have to watch that while he's being so active he doesn't hit the area.

And that is our journey so far. If you're reading this just because your curious, I hope it gave you a bit of info regarding what it's all about. If you're reading this because you, your son or someone else you know has this condition and is just starting their journey, I wish you luck and send positive thoughts your way. It would be a lie to say it's easy, but you get through it - I found it more emotionally draining than anything (as a mother). There's more information at http://www.hypospadiasuk.co.uk/ and also some great support from mums and sufferers on the Hypospadias Awareness page on facebook.

Zachary has been such a brave little man.