Caring for a baby with a stoma

13 March, 2021

As today is Mother’s Day we’d like to recognise all the amazing mums who are caring for children who have had stoma surgery. Vicki’s son Harry was born in February 2018. He had problems passing faeces due to Hirschsprung’s Disease* and when he was six weeks old his consultant made the decision to create a colostomy.

Once the colostomy had been created, Harry went on to thrive, however caring for a child with a colostomy bag wasn’t always easy. Before Harry had his operation, Vicki was given a doll with a fake stoma to practise putting on a bag. She said “While he was in hospital, I only changed his bag once and then we were sent on our way. Over time I became more confident and a dab hand at changing his bag.”

“I sought help from members on the Colostomy UK Support Group page on Facebook. I shared Harry’s story and the members fell in love with Harry and gave me the support I needed to help me through a difficult time. I asked for advice when we experienced a spate of his bag leaking continuously and when Harry suffered from trapped wind. What members on this page don’t know about coping with stomas isn’t worth knowing! I also met other mums whose children have stomas. I helped out one lady who had been left in the lurch without any neonatal bags for her baby.”

Vicki shares her tips for parents who have a baby with a stoma

1) Don’t stress, it’s only poop!
2) There aren’t any nerves in the stoma, so your child cannot feel pain if you touch it.
3) Leaks aren’t always obvious. If your child is in distress and you don’t spot a leak, change the bag anyway.
4) Poo can cause sore skin and pain for your child when the bag leaks.
5) Use a barrier when needed. We were advised to always use a barrier, but this made it trickier to stick the bag. Harry never experienced sore skin, so we clearly did something right!
6) Empty air out of the bag. They’re no fun when they go pop in the night!
7) Make sure the skin is dry before you apply the bag.
8) It’s fine to bath the baby with the bag still on. In fact, it’s less messy. I always changed Harry’s bag after his bath, to ensure it didn’t become unstuck.
9) Let babies have time without the bag on. Lay them on a towel or mat.
10) If you think you’re ready to cry, ask for help! There’s always someone that can offer advice on the Colostomy UK Support Group page on Facebook. There’s also your stoma care nurse and the Colostomy UK helpline (0800 328 4257), manned by volunteers who can arrange for a parent in similar circumstances to phone you. Remember it’s okay not to be okay.

Article taken from our Colostomy UK Tidings Magazine, Issue 52, Winter 2018, page 35 – read the full article here. If you’d like to discuss any of the issues raised in this article, or you’d like support, call our 24 hour Stoma Helpline: 0800 328 4257

* Great Ormond Street Hospital for children state that Hirschsprung’s disease is a rare disorder of the bowel, most commonly the large bowel (colon), which can lead to severe constipation and intestinal obstruction. Hirschsprung’s disease affects one in every 5,000 babies.Normally, the muscles in the bowel squeeze rhythmically to push faeces (poo) through to the rectum. In Hirschsprung’s disease, the nerves that control these muscles (ganglion cells) are missing from part of the bowel. This means that faeces cannot be pushed through the bowel in the usual way.

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