Caring for a newborn with a stoma

Caring for a newborn with a stoma

Not the blog I wanted to write, but an important one all the same! When my eldest was born in 2016 there weren’t blogs for this and support was difficult to find in terms of a community of people who walked in similar shoes. Eight years on and things are so different now. You only have to search a simple hashtag and a whole world of people sharing and supporting appears on your feed. It is a wonderful place to be when you come from a state of loneliness, where in your personal life there isn’t anyone else that can relate, or has experienced anything similar. As I write this, only this week I have been asked a few times on the school run what I am doing with my days, as if I have a magical maternity leave of coffee shops and sunny walks.

I don’t tend to share freely that in fact it’s the exact opposite. Today for instance we haven’t left the house yet. The baby’s stoma bag has leaked already and I am waiting to hear back from the hospital as I am back and trialing different options to see what is best for his skin to help avoid leaks. Post stoma surgery is difficult where stitches are dissolvable and waiting to dissolve as a stitch or part of, can cause leaks if sitting in the wrong place when you try to do a bag change.Stitches are something you can not avoid, and sometimes they can pop when the skin isn’t healed. If you notice anything like this you must make contact with your stoma nurse so they can advise what to do. This did happen to us but it wasn’t bad enough to need any intervention. What it did cause though was more leaking and sore skin. This is very common for little ones.

As an adult with a stoma, once the dreaded itch starts you can recognise it and change your bag before a leak happens. With a newborn being unable to communicate and crying for all their needs even before a stoma is concerned, it is extremely difficult to know when a leak has started, and inevitably ends in a full blown leak. This results in a two man job of having to stop the baby from bringing their knees up while you remove the existing bag, clean the skin, and apply a new one.

Distraction techniques don’t work much with a newborn. They aren’t happy to be disturbed and have clothes removed, and even using an adhesive remover doesn’t stop from the sensation of something being lifted off the skin. Using effective products and working with your stoma nurse will ensure it can be done as efficiently as possible. I won’t paint a picture of it being a magical experience. When they are peeing at free will and you are waiting for the skin to dry it’s not magical at all!

When a stoma bag change is planned we play some low-fi music and create a calming chilled atmosphere as best as possible. Bath time is beforehand, a warm towel from the dryer to snuggle them up in and cuddles, before you get started on the bag change. We sing along to the music and use a dummy to soothe him. All the products needed are lined up ready, the base of the bag cut ready and one of us is warming it under our arm while we tag team to calm the baby and start. Following the bag change, we give him a little massage and get him dressed ready for a feed, cuddles and bedtime. Our eldest likes to help too and strokes his head and sings along. It really is a family effort!

With my partner working from home, if a bag leak happens when he is on a zoom call that’s when things get interesting. I try to make sure the changing table in his room is prepped for a bag change in an emergency, but sleep deprivation means I don’t always get to it and boy does that sting when I can’t find things. I have a craft trolley I use for supplies but I find it awkward during an emergency change bending down to grab things. I have one hand on the baby keeping him from wriggling, output coming out, and a pee for bonus fun! A felt storage caddy is a good alternative that sits on the side of the changing table and has everything I need. It is utter carnage trying to change the bag on your own. I tell myself it will be over before I know it, nothing lasts forever and if I remain calm, the baby will be calmer. When they are older you can distract them with toys and screens, but at this stage none of that works. Singing, telling them a story, and stroking their head or nose seems to help if I can do the rest one handed which I am learning to do quickly.

Make sure you take photos for each bag change in the early changes and keep them in a separate folder on your phone. Peristomal skin can go from ok to awful so quickly, and it is helpful for stoma nurses to see the progression and be able to recommend the right products. Powders have been the most successful for us, but everyone is different so make sure you make contact with your child’s stoma nurses and don’t just try random things. Newborn skin is so sensitive, and it will take a while for it to get used to the bag changes. At times it can feel like you are drowning, but make sure you don’t do it alone when you can, reach out to your support network and vent, cry and scream if you need to. Better days will come.