- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
January 2013 Moms
Hypospadias Hippopotamus!
Hypospadias is one of the most common birth defects but it is rarely discussed. It affects approximately 1 in 300 boys and my son happens to be one of them.
It’s a scary sounding thing.. “Hypo-spay-dee-us” but the paediatrician present at our sons birth made it sound like something insignificant, “ oh he’s got Hypospadias, but you’ll just get that fixed later on, just don’t get him circumcised”.
That was really the only thing I heard “ don’t get him circumcised” was music to my ears. I met my Canadian husband whilst travelling and moved to Vancouver a few years ago. Circumcision is still the norm here although they don’t routinely circumcise any more. My husband and I had been ‘debating’ , read arguing, about circumcision since we found out we were having a boy. He said it wasn’t even a question – in my mind it is unnecessary and really just plain mean – but, I figured this was a man thing so we had agreed that if our son was going to be circumcised then Daddy would have to go with him and that was that.
So, fast forward a few months and we go to see our family doctor to get a referral to BC Children’s Hospital to arrange for the Hypospadias surgery. I hadn’t really looked into it too much, the paediatrician seemed un-phased so so was I.
Our doctor took one look and said something along the lines of ‘Oh, um, yes, you will need to get that fixed” and that was about it. So, having finally come around from the effects of child birth –I’m a bit of a slow healer – I started looking into Hypospadias and began researching it on the internet.
WOW!!! I was thrown into a world of medical jargon and scary images.
I found links to gender confusion and intersex and even came across very negative comments - especially from parents of boys with the condition.
Some were adamant that they would not tell anybody - not even family or friends - and intended to never tell their son that he had surgery because they were so embarrassed.
I was overwhelmed and under –informed. I looked at my beautiful, perfect, baby boy and knew that we had to learn as much as we can before we made the decision to go ahead with the surgery.
What I did learn is this – Hypospadias affects approximately 1 in 300 boys and in simple terms is when the’ pee hole’ is in the wrong place often requiring the boy to sit down to pee. It ranges from mild, where the urethral opening is on the underside of the head of the penis or, severe, where the opening is at the base of the penis. When this occurs there can be a question of gender and blood tests are carried out to confirm the sex of the baby. There are other associated elements such as hooded foreskin and chordee (curvature of the penis) but these are not always present in every case. Hypospadias is not life threatening and can be corrected with surgery, usually performed by the time the boy is 18 months old.
We met the surgical team at the hospital a few months later, and were asked hundreds of questions about my pregnancy, our medical history and if my husband and I might be related! We then met with the surgeon who explained that our son had ‘distal’ or mild hypospadias, he didn’t require the gender confirmation blood tests and that they would circumcise him so that they could use his foreskin to create extra urethra tube, close the urethral opening on the underside of his penis and re-route the new longer tube through to the tip of the penis.
Once we had this information I began to feel uncertain about our decision to operate. During the months leading up to his surgery I scoured the internet for information about Hypospadias, the causes, the surgery and the recovery and found only one book aimed at parents.
I bought the book and read it cover to cover, I found a support group on Facebook and met other parents facing the same issues. It was such a relief to find so many other people who were trying to make the same decisions, had the same worries and were willing to talk about their experiences. Many of the parents I have met have not had the same experiences that we have had. Their sons have had more severe Hypospadias and have needed more surgeries. They are struggling at nursery and at school since they cannot always stand to pee and don’t receive the support they need from the schools. Some are fearful of going to the doctors and don’t want to have to go through surgery again.
There are virtually no resources for these families or children and that goes for children in the UK, in Canada and around the world.
This lack of resources thankfully led me to a support group on Facebook full of very passionate caring people. Through this support group I became friends with another mum and realised we both had the same goal of raising awareness and to write a book for boys with Hypospadias – and that is where we are today.
We are currently in the process of writing our book “Hypospadias Hippopotamus” which follows Ben and his toy hippo through surgery, potty training and starting school – all the things that boys with Hypospadias can struggle with. We are reaching out to our friends, families, communities and the media to raise awareness with the aim of publishing the book and making it available to anyone affected by Hypospadias.
We also have our own Facebook page and Twitter account and are beginning to get noticed by some really exciting organisations – come and check us out!
Back to our story….
Our son had corrective surgery and after 2.5 hours under anaesthetic he came into recovery looking a little worse for wear but completely oblivious to the process he, and we, had gone through.
The weeks that followed were challenging. He had to wear a stent – like a catheter – and we had to remove the dressings at home. Initally he needed a lot of care and was highly medicated to manage the pain. After the first couple of days we got better at caring for our little boy and he started to feel better. The swelling came down and we went back after a week to get the stent removed. He couldn’t play on his rocking horse or on the swings for a couple of months and we didn’t take him swimming in case of infections but other than that he was back to being a little monkey in no time! We were amazed how strong and resilient our little boy was – and so grateful that he was able to have the surgery at an age that he wouldn’t remember it later on.
He just had his check up with the surgeon and they are delighted with how he has healed. We will go back in 12 months to make sure there are no complications but have everything crossed that he will not need further surgery.
A note on that…..although successful surgery corrects the abnormality as much as possible, it can sometimes result in other issues and can leave scar tissue which does not grow with the child.
In many cases no further surgeries are required but it is imperative that any boy who has corrective surgery knows that if he ever has any issues, pain, difficulty peeing etc that he be able to speak to his parents.
We will always tell him that he has hypospadias and will encourage him to be open with us about any problems he has.
As far as anyone else will know he has a ‘normal’ penis and will be able to pee standing up and shouldn’t have any fertility issues. It has been a difficult journey but we know that we made the right decision.
Thank you for taking the time to read about our journey so far and please keep your eye out for Hypospadias Hippopotamus!
This discussion has been closed.
Re: Hypospadias Hippopotamus!
Thanks Little Dawson!
No, I wasn't calm throughout...just ask my husband!! lol!
I might have been calmer if there was more information available - that's why I am trying to raise awareness of Hypospadias. It seems odd to me that for something so common is so unknown. If by telling our story on sites like this helps one family feel less embarrassed then its all worth it.
My son had this surgery less than 3 weeks ago (at about 6 mo, 3 weeks, I think). It was an hour under anesthesia, performed by a great pediatric urologist. No stent. Narcotics for about 2 days, then baby advil. HIs bandage came off in 48 hours, in the water, no issue. We bathed him 5 times a day for 7 days, and then 2-3 times a day ever since. We go for our follow up appointment tomorrow. Looks like it's healed great. He had no issues - just annoyance with the excessive bathing, which was needed to promote healing. Surgery went great, recovery went great - he now pees in a perfect "normal" little arch. Glad it's behind us. He is expected to have a completely normal future - typical potty training, typical puberty and typical sexual relations as an adult. I'm not worried.
Would love if you sent along the facebook group name though - just to keep in touch with other parents like us! Thanks!
Good luck to you, Christina