Stoma surgery as a newborn

Stoma Surgery as a newborn

Preparing for a newborn to have stoma surgery is not a position any parent/carer wants to be in. Having notice is awful enough, as an emergency even more devastating. Unfortunately, at the time of typing this I find myself being told to expect the imminent birth of my second son to mean stoma surgery soon after birth. Genetic testing has led to this for the condition Hirschsprungs Disease. To find out more of what this is, and how it results in stoma surgery can be found here.

Support network
Prepare your loved ones with the news. This is where you need to decide how much or how little you want to tell them. Be sensitive to how they may react. It may be too much for them, and you don’t want to be worrying about supporting them when it is you that is living in the reality of it. It may be that you want to keep it to a very close circle of people, or you may feel you want to share it to a wider group. There is no right or wrong with this. Whatever option gives you the support you need, and alleviates any pressure or anxiety is what’s best. Protecting your own mental health, and being able to share with others takes courage and strength. Never underestimate that. I made the decision to share our journey to support others, as I couldn’t find much to take comfort from myself. I have received lots of inbox messages from anxious parents/carers, and hope that I have helped in some way so those individuals know they are not alone.

Clothing
When shopping for baby clothes the options have never been so splendid! So many beautiful things that you want to dress them in, but what you need to think about first and foremost is accessibility. All in one outfits that aren’t very giving are not appropriate for surgery, or soon after. For me, dungarees were a great option for my son as they were easily accessible with poppers on the top and bottom to access the stoma bag quickly. Clothing adorned in zips and poppers have been the focus for us, wanting to make sure we can access the stoma bag with minimal disruption to the baby. In the early days when we establish which stoma bag works for them, there may be multiple outfit changes day and night and leaks to go with it. We have been lucky to receive some wonderful gifts of clothing and second hand too which all helps to keep the costs down. Wearing their Sunday best will not be the focus in those early days!

Health care professionals
With a newborn there are so many variables to contend with, in terms of finding the right bag for them. Much like adults, the one you go home with may not be the one you need to use long term. If leaks start happening a lot and you have followed a stoma nurse’s advice, ensure you reach out and ask for alternatives. You should leave the hospital with contact details for who to reach out to. They are very busy people, with many hospitals not even having dedicated paediatric stoma care nurses as such. This means they are covering both paediatrics and adults. Don’t leave anything to chance, and if you have a question however big or small, make sure you ask as you may not get answers back straight away.

Home environment
Having your baby’s nursery ready for stoma bag changes before they get home will help you immensely. If you are having a c section, having everything above waist height will be advised as you shouldn’t be bending down. Having a changing space for nappies and bags with the products you need next to you is essential. You won’t be able to have cut bases ready for doing stoma bag changes until your first order arrives. The stoma nurses will send you home with enough to start off with, and an order will be placed to arrive when you get home. Check which supplier they use, and if you have good experience with a certain one ask if you can use them. For me, I have used Respond for my little man for 8 years, and myself for 5 years. I wouldn’t want to go with anyone else, and luckily for me it is the hospital’s go to choice! A carry case with enough supplies for a few bag changes is enough to start off with. Ensure you keep it regularly topped up and don’t leave anything to chance. It goes without saying, the same in the car is essential also.

Siblings
It is such an exciting time for siblings expecting the arrival of a new brother or sister. This can be teamed with anxiety and typical worries about how life will inevitably change. For babies that are born with a stay in intensive care planned, siblings should be prepared for what they may see. The intensive care environment is intense, clinical, and as far from a nursery as you can get. Your baby may be cannulated, have a feeding tube, and need support to breathe. Seeing this is distressing and upsetting for anyone, least of all children. We are fortunate that our hospital has sibling packs which provide activities to provide comfort and preparation for what siblings will see. There are two little teddies, one for the baby and one for the sibling, so they can have one each to keep each other company. Visiting is extremely limited in intensive care which may be difficult for siblings to accept when they just want to visit and spend time with your new addition. Lots of comfort, video calls and reassurance that it isn’t forever, and they can make up for it with lots of snuggles when they get home.

Distraction
Wherever your changing base is for nappies and stoma bag changes, when the newborn phase has passed and they are far more inquisitive and active, you will need ways to keep them from not moving away when you try and change their bag. Someone else may not always be on hand to help, and in the middle of the night when output is pouring out and they are wriggling, getting a bag on when you are sleep deprived is pure hell!! Having a mobile, lights on the ceiling, quiet soft music, comforters, or other distraction devices you have should be easily accessible and on stand by to help.

There is plenty more you could explore, but for now they are the basics. If this blog applies to you, I wish you all the best with your baby and their stoma care. Remember you aren’t alone x