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Ostomy Children

My beautiful boy, you have a long road ahead. You were born with the strength of a warrior and the fight to overcome more than most do in their whole lives within the first few years of life. You need stoma surgery like Mummy did when she was born. The word stoma is the opening made in the tummy to divert stool out of the intestine. It is like a rose bud sitting proudly on top of your skin. It moves sometimes like a wriggly worm and can be a bit naughty and poop when you don’t want it too.

A new school year brings with it so much hope and promise. For me working, in education it has always felt more like New Years than New Years itself. It's such a milestone when your child progresses to the next academic year. Another Summer has passed making memories and letting them be kids for that much longer, in a world where it seems so keen on advancing at an exponential rate. I think we can all agree that the youth of today seem to be growing older at a far quicker rate than generations before them. 

Carers Week (6th-12th June 2022) was something that was never on my radar until I had a poorly baby. Truth be told, I never thought of myself as a carer, just a Mum until I was made aware that such thing as Carers allowance existed when said baby was almost 2!! 

I am rather a sociable being and love the bones of my friends. Having a poorly child will show you very quickly who the real ones are, the ones that reach out. The ones that have the difficult conversations then entertain your anxieties and dramatics in times of hardship. Child-care has always been an achilles heal for us with a child with both an ostomy and a feeding tube. 

Did you know that GP’s in the UK get less than 2 hours training on eating disorders in their medical degree (sourced here)? It’s simply inconceivable. The topic of eating disorders was something I never had to give much thought about until I had my son, yet now it consumes most of my thoughts. Eating disorders awareness week is a chance to share our stories and connect with like minded people.

It's that time again when my baby boy (not so much baby anymore) has his birthday and this year he turns 6! He has come so far, and exceeds all expectations with a big personality to match. With that light at the end of the covid tunnel looking brighter and brighter each day, many children have been having birthday parties where possible.

As I write this blog I am home from an unexpected hospital stay with my little boy. He got dehydrated quickly and required IV fluids. Being a patient with open access due to this needs it took one phone call and only a few hours before he had a cannula in and fluids given. Now I understand that it may take a lot longer for some, and we have ourselves waited many hours for such things, but it never fails to amazing me how they can take a poorly child and so quickly make it seem brighter and hopeful that they will be ok.

In an ideal world you would leave hospital with your baby (poorly or not), and the leaflets fall into your lap about support whether it be practical, emotional or financial. For me a lot of what I am about to share had to be found as I went along. Unfortunately there are disadvantages according to where you live in the UK, as to what access you have to some of them. That is why I felt it so important to keep the conversation going in the hope others will find out this information much quicker than I did. 

I started blogging about having a little one with a stoma in 2016. I used Instagram as a platform to share my story in the hope of helping in the way many had for me by sharing the highs and the lows of having a baby with Hirschsprungs Disease. The bowel disease which affects 1 in 5000 babies a year in the UK, is caused by the nerve cells in the intestines needed to move stool along into the rectum for toileting (known as ganglion cells) not being present. This causes the body unable to remove its own waste, with the tummy starting to distend and very little to no poo being passed.   Surgery is essential with bowel washouts...

As soon as your child expresses an interest in going to the same club as their best mate, the search begins to secure a taster session, work out how it will fit around your schedule, and if it is affordable. If your child doesn’t have an additional learning need or special need have you ever stopped to consider the risks in them doing it anyway?