Hypospadias Hippopotamus – Emotional side to Hypospadias

Article by Lisa Mcclintock

http://lcmcclintockblog.wordpress.com

 Hypospadias Hippopotamus

 

Hypospadias is a congenital condition, which means it’s something you are born with.  About one in 300 boys in the UK are born with hypospadias.  It is a condition that affects the development of the urethra in boys.  The urethra is the tube that carries urine and sperm from your bladder to the outside of your body.  Hypospadias causes the opening of the urethra to develop in the wrong place.

My son Benjamin was born with hypospadias in 2007.  Benjamin has penoscrotal hypospadias, which means the hole in which he passes urine, is close to the scrotum.

The paediatrician diagnosed Benjamin at birth, but due to where the hole was they needed to do chromosome tests to determine the sex.  This was a very emotional seven days after his birth as I was unable to register his birth.

For any new mum, all they want to hear is that they have a healthy baby, so when greeted with the news of hypospadias and also possible gender queries it is extremely emotional and distressing.  The only advice I can give is, try and remember you have the most precious gift in the world and you are able to hold them.  Don’t become overwhelmed by all the hypospadias stories you will read, each child is different and requires different treatment and most are minor cases.

Surgery is normally carried out at around one years of age.  Following surgery, a catheter is left in place to help your little one pass urine, this is taken out around a week later.   Multiple surgeries may be required, but again this depends on the severity of the case.  No mother likes to see there baby go through surgery, and it was an extremely emotional time, so a strong support network is vital.

Following two surgical procedures to extend the urethra, we are having problems with fistulas (leaks in the new urethra).

My son was four years old when we first discussed his condition with him.  I felt if we had discussed it at an earlier age, he wouldn’t be able to fully understand.   He was always aware that he had a leak when he passed urine and therefore needed to sit down, but he never asked why.  Children seem to be able to accept things at a young age but Benjamin is still unable to stand to pass urine and at the age of 6, this is causing emotional upset for Benjamin as other boys at school don’t understand why he has to sit down.  Also, we have hit a brick wall as he is terrified of anymore surgery.

Unfortunately there is currently no emotional support team/network available for children or parents apart from some social media forums.  So, I and another mum from Canada have decided to create ‘Hypospadias Hippopotamus’!! A children’s book which takes children on a journey about the condition and the treatment involved.

Through the book, we hope to raise awareness of the condition which is currently a very taboo topic due to the nature of the condition.  Boys who have the condition should understand that they are not alone and other boys also have the same condition, and most importantly that they are normal!!

Since starting the process of writing the book, I have let Benjamin be involved and this seems to have relaxed his approach to the condition and surgery.  He openly talks about ‘hypospadias hippopotamus’, he doesn’t appear to be so afraid of surgery or hospitals and has a smile that I haven’t seen for a long time.  This is only one child, if the book can help more children understand hypospadias and the recovery process involved, what more could a mother ask for!

 

Follow my blog to keep up to date with the progress of the book. http://lcmcclintockblog.wordpress.com

 
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