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!
Article written by Lisa McClintock - check out her blog for more news & about the upcoming book!
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