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 required until the baby is ready for major bowel surgery. Unfortunately my hospital where I gave birth did not recognise the early signs despite me saying. It took me shouting at the staff in panic to do something as Jake didn’t want to feed and his tummy started distending. Mothers instinct was unfortunately right on the money and within a few hours he had to be blue lighted to Noah’s Ark Children’s Hospital in Wales. There the team recognised the signs straight away and a six week plan of three bowel washouts daily and a biopsy confirmed I had passed on my terrible genetics. It was a 1 in 10 chance he would and it will be something I have to live with for the rest of my life knowing how much pain and suffering I have caused my precious baby boy with ten surgeries to date.
I suffered with PTSD in the years that followed with Jake having the disease much more severely than myself. I had never suffered with mental illness before. When you have a sick baby you are in survival mode. He didn’t sleep through the night till he was 4 ½ years old. We had lived for those first few years as zombies going from surgeries to appointments constantly, and a 3 month hospital stay when he was 18 months old following a bad infection. I found myself forgetting things, being clumsy, loosing hair and being constantly exhausted. Through it all sleep deprivation has been the worse to deal with. I can handle hospital procedures, doing feeding tube changes, dealing with bodily fluids and medicines administered around the clock. Stoma bag changes were constant in the early days with Jake loosing 4 litres of stool daily. It was the worst the hospital has seen in a baby with Hirschsprungs Disease and it took a lot of research and trial and error to get to where we are today. What I have found the hardest is walking him into each of his ten surgeries knowing it is my fault. I would truly give anything to take it away from him. I would give my own life. People will tell you its not your fault and you shouldn’t think like that but how can you not? I would be lying if I said I wasn’t worried about what the future holds. Will he resent me for what I gave him? Will we be close and keep our mother and son bond going?
It wasn’t until things got easier and Jake could go to Nursery that I recognised how much my mental health had been affected. We were slowly but surely leaving survival mode and could take the time to enjoy new experiences and not feel like we could loose him at every new problem. I would sit in my own thoughts and fail to wrap my head around what had happened, and how far we had all come. It took a long time to mentally relax, I don’t think you ever can fully when children are concerned. For a while I would find sitting in my own thoughts too uncomfortable. I would need constant distraction from a device or keeping busy. My own thoughts were not what I wanted to hear and I needed distraction from them in any way I could.
The mental health charity Chasing the Stigma has a fantastic search engine called Hub of Hope where you can find the nearest mental health support to you. The NHS also has 24 hour advice and support with health professionals and the opportunity for an assessment. Both can be find following this link:
The Samaritans have a 24 hour service to talk to someone right now on 116123 and crisis support is provided across the UK by texting HOPE to 85258 through the Crisis Text Line. Telling just one person can make such a difference whether it be a family member, friend or your doctor. Who ever it is, don’t delay and start looking forward. There is nothing to be embarrassed or ashamed about.
From the past 5 years I have learnt the importance of doing things for yourself. For me its running, I try to go out 3 times a week. Allow yourself the time to support the little wins, ensure you have three meals a day and keep hydrated. All these things have helped me think with more clarity and allow my mind not to be all consumed with medical chat as it was literally taking over my mind twenty four hours a day. I have also been very fortunate to have been given the opportunity to speak out about parenting a young ostomate and am working with the Be The Change campaign by Pelican Healthcare LTD and Respond Healthcare Ltd. Working to raise awareness of the disadvantages faced when living with an invisible illness, new signage was adopted in Cardiff in July which was a proud moment for me. Finally, I have found great comfort from connecting with other families in a similar position and in the ostomy community online through my Instagram account gutsy.mum. Find what works for you, and remember that you need to be the best possible version of you for not only your child and that you deserve it for you too.
Take care, Rach x