Addy’s diagnosis of biliary atresia inspired her mum and Grandma to get involved in some amazing fundraising for Children’s Liver Disease Foundation. Now she is 34 and a mum herself, she shares her story.
I was diagnosed as a baby, but I think I was really fortunate in that my health didn’t begin to deteriorate until I was about ten. Even then it was at a slow pace and so for a long time I don’t remember feeling like I missed out on much. Eventually PE and things became too much. I don’t think this was understood by my teachers and I was often pushed into doing something I couldn’t do as I was so out of breath or felt weak.
My first year at high school was the year I was transplanted and that was a bit challenging. I joined in September, had my transplant in May and then didn’t return until the following school year. Despite this I don’t remember feeling left out and think I must have settled back in quite quickly.
It was during my time in hospital though that I decided I wanted to become a nurse, both as a result of good and bad experiences. Some amazing nurses I encountered made the days in hospital so much more bearable while there were others who I found more challenging.
I qualified as a nurse when I was 25 and chose to specialise in paediatric nursing. My nursing career is largely unaffected by my transplant. I did shield during lockdown and I do avoid looking after patients with herpes virus where possible, likewise children with chicken pox or infected eczema. However, if I was in charge and there was an emergency situation I would still be involved. I work in a general paediatric ward where you can’t avoid germs but that’s ok . I’m pretty robust. I still work long shifts both days and nights.
For many years I didn’t really overthink the baby situation. I don’t recall anyone ever discussing with me if it would even be possible, in fact my original assumption was that it wouldn’t be. As I got older, I realised people did have babies post-transplant. However when I was younger, I never truly understood the likelihood of me having them and it wasn’t something I asked about.
As I got into my 30s and met my partner, I started to think a baby was something I wanted. Unfortunately, we had three losses prior to a successful pregnancy, and it began to feel felt like it might never happen. When it did happen I found that pregnancy and working was exhausting and I was advised to come off nights as I was struggling. I also needed an iron infusion. I was under a consultant locally and was kept an eye on regularly and seen once in Kings. I was fortunate to be well throughout from a liver perspective however, although I understood the risks of my baby being small, and me having gestational diabetes, pre-eclampsia and obstetric cholestasis.
All was well, however, until around 33/34 weeks when the placenta blood flow and growth of baby started slowing and I began to have reduced movements. I was then monitored almost every other day, until it was decided he was no longer growing enough and needed to come early. It wasn’t a big drama or emergency but a caesarean section planned for a few days later. The C section was actually my choice as I was concerned I might have lots of adhesions which I think increases risk of bleeding.
So, Ernie was born at 35 weeks and five days, weighing 4lb 1oz. He spent eight days in special care to feed and grow then we came home.
Being a Mum is hard!! It’s not been a particularly easy journey for us. Ernie has had lots of little issues such as bad reflux, colic, cows’ milk allergy and an inguinal hernia which needed repair at four months old. As he has grown, things have got easier. He’s now just had his first birthday and is mostly such a happy little boy. He is very precious as I don’t think I will go through another pregnancy given he came early, and I feel very lucky to have got away with no real complications myself or for my liver.
Although Ernie is still little for his age he is doing amazingly otherwise with his development.
I couldn’t have got through the challenges we’ve faced the last year without my mum and it makes me realise how tough it must have been coping with a baby with a serious condition. She’s incredible!
