Mother’s Day | Living with Hirschsprung’s Disease

When you are pregnant you dream of the life you will have when your baby arrives. The first time you see them, feed them, introduce them to family and friends. Getting home and living in your newborn bubble while you soak up all the new experiences and love that bringing a new child into the world brings.

Being a first time Mum I had all these thoughts in my mind and was willing it to come true, knowing there was a 1 in 10 risk my little boy would inherit Hirschsprungs Disease from me. When he came out and they did the first checks with nothing showing a red flag, I couldn’t believe our luck. Fast forward 12 hours and he is blue lighted to a neighbouring hospital for specialists to take over his care after me screaming at midwives and doctors who wouldn’t believe me when I saw his tummy start to distend and he wouldn’t feed properly.

The dream had gone. All the firsts had gone into not getting home for 6 weeks with surgery 1 of 10 having been done at a few weeks old. Still going back to the hospital for check ups and treatments makes me feel physically sick. I didn’t realise at the time that I was experiencing PTSD for the years that followed. How to you un-see all the suffering you have watched your child go through as a direct result of your own DNA? I would see Mums say how awful things were that their baby had been up in the night. I used to think how lucky they were that they were even home. That they got to feed their baby themselves. That their baby wasn’t hooked up to multiple machines and that so many doctors knew who he was for all the wrong reasons.

Here are some things that helped me navigate the first few months:

1. Have someone message family and friends for you unless you can and want to.

It can be stressful trying to keep everyone updated when your baby is so sick and understandably everyone wants to know how you and baby are. I started each day with an update which I sent to everyone, that way I didn’t have to keep re doing the same message repeatedly.

2. Accept help.

This was one of the hardest things I found. I didn’t want to burden anyone. Visiting hospitals involves expense and a lot of time, but if someone wants to let them. It can be easy to wallow and become insular with what is happening in those 4 walls. If someone is allowed to bring food and drinks for you let them, if visiting is allowed let family members organise between themselves who should come in to take the stress away from you.

3. Keep a diary.

Every conversation with a consultant, get their name and write a few notes and the time and date. I wish I had done the same on multiple occasions. With severe lack of sleep in the hospital environment it can be hard to remember what everyone said and when.

4. Join closed social media groups.

I found some for my sons condition and groups for having it myself. During those early dark days I felt so alone and these people understood more than anyone. Even if you want to just read comments and not engage it can still help.

This Mother’s Day and every Mother’s Day my heart goes out to those that have lost, couldn’t have, and have suffered. You mourn for what you thought you were going to have, for the life you thought you were giving them, and for the life your family should have had. Going to baby groups was hard, the things others would talk about seemed so trivial and irrelevant, but the more I went to them, the more I realised it was all relative. This was my Everest and no ones life was perfect. I am not a religious person, however I do believe you are only giving in life what you can deal with and everything happens for a reason. The same for my boy. He is confident, cheeky, chatty, extraordinarily brave, strong and lights up a room. He is the light of my life. I will spend a life time trying to be the best Mum to him, being his advocate, fighting for his support in school, and getting him the treatments he needs. I may have never had the ‘typical’ newborn experience but this was ours and I am proud of how far we have come.

Until next time, Rach x

@gutsy.mum