Please be aware: This story discusses miscarriage
*Abigail was diagnosed with autoimmune hepatitis at the age of 15 and in her early twenties her medical team told her she couldn’t have children. A few years later a new medical team said the data was changing and it might be possible, but miscarriage was not discussed. Thank you for sharing your story, Abigail
When I was 15, I developed jaundice that lasted a while. My mum kept telling me to drink more water and it would go away, but then I had a variceal bleed. I ended up in my local hospital for months where my medical team put me on steroids on the assumption that I had autoimmune hepatitis. It wasn’t until I was transferred to a bigger hospital and had a liver biopsy that I was given the official diagnosis.
Even though I never fully went into remission, I managed pretty well. I went to uni, travelled lots and did everything I wanted. I was on and off steroids and started Tacrolimus when I was 21. At 27, I was also diagnosed with rheumatoid arthritis.
When I was in my early 20s, doctors briefly mentioned I couldn’t have children. It wasn’t a big discussion and didn’t come up again. At that age, I wasn’t really thinking about kids, so I just shrugged it off.
During the first Covid wave, my partner and I moved to Wales and I got a new medical team. One of the first things they asked was if I wanted children. They said the data was changing and that it might be possible. We had been thinking about adoption, so this threw me for a loop. I had mixed feelings – scared because I’d always been told no, but also wondering why I hadn’t explored this sooner.
I had a great joint clinic appointment with the obs and gynae team. They explained the risks of pregnancy with my medication, but no one mentioned miscarriage, which is the stuff nobody wants to talk about.
My medical team told me I couldn’t have medical management at home and had to have surgery instead. I had to wait for two weeks for it. They were a dark and sad few weeks
We got pregnant the first month of trying, which was a shock but a good one. I had some bleeding at six weeks, but it was fine. Then at around 10 weeks I had more bleeding and found out the baby had no heartbeat. I hadn’t miscarried yet, but my medical team told me I couldn’t have medical management at home and had to go for surgery instead. That made a bad day worse since I had that choice taken away from me. I ended up having to wait two weeks for surgery. They were a dark and sad few weeks.
When I got pregnant, I thought, “Wow, my body can do something right!” But then it let me down again. It felt pretty crappy. I might have felt better if there was a reason for the surgery, but no one could explain why. I wasn’t offered any emotional support, but my nurse specialist was amazingly supportive.
Pregnancy for women with cirrhosis needs to be discussed more, along with the risks like variceal bleeds, medication impacts, folic acid dosage, and pre-pregnancy work like MRIs and banding.
I don’t know why I miscarried. It’s made me anxious about getting pregnant again and potentially needing surgery, especially knowing the miscarriage rate is one in five for everyone. Still, having the chance to try and understanding the possibilities has given me hope.
Going through this journey has been incredibly tough, but it’s also opened my eyes to the need for better communication and support for women like me. We need more conversations about the realities and possibilities of pregnancy with cirrhosis, so others don’t feel as lost or unsupported as I did. While I’m anxious about trying again, I’m also hopeful that sharing my story might help others navigate their own paths with a bit more confidence and understanding.
*Name has been changed as Abigail wishes to remain anonymous
