Dana was enjoying her third pregnancy when she started experiencing severe itching and a constant thirst which led to the diagnosis of acute fatty liver of pregnancy and the emergency delivery of her baby. Thank you for sharing your story, Dana
I was in the third trimester of my third pregnancy and in good health when I suddenly started itching. At first my doctor put it down to my eczema, but there were no bumps or redness on my skin. The itch moved rapidly to the soles of my feet and the palms of my hands. It was so intense and severe that my nails alone were not enough to relieve it and I was scratching and jabbing at my skin with a wooden fork. It was like having fleas and it was non-stop. Then the itching went across my whole body and I also developed a constant thirst and was drinking water by the litre.
Because itching is also a symptom of liver disease, my bile acids were checked but the results were normal. The doctors never thought it could be ALFP because that usually happens in the first pregnancy. I did feel pain at the bottom of my right shoulder blade, but my midwife said it was the baby kicking. I now know it was a sign.
I also felt really unwell and was almost going in and out of consciousness during a normal hospital appointment. My midwife took me to triage where they did a blood test and monitored the baby, which was due the following week, and told me to go home and relax until they got the blood test results. I had just walked through my door when the hospital rang. My bile acids were 400+ and they said: “Get back here” because they needed to deliver the baby immediately.
All this happened in the space of a few days.
Researching AFLP
I now started losing my memory. I don’t remember my sister taking me back to the hospital or anything after that. The doctors told my partner I had AFLP which was very rare and I was the first person ever in the hospital to be treated for it. He then panicked because he didn’t know whether I’d live or not. I was surrounded by a lot of professionals and a liver specialist researching AFLP when I was put under anaesthetic and my baby was delivered. My baby went straight into neonatal intensive care because he wasn’t breathing, they suctioned him and he started breathing on his own quite quickly. 
Meanwhile, I was jaundiced and I think I also had an infection and was being treated for suspected sepsis, my organs were going, and I was given a transfusion and was on drips and antibiotics. If I hadn’t responded they were going to send me to the Royal Free Hospital. They brought the baby to me, but I didn’t remember that or whether it was a boy or girl. Apparently when I woke up in ICU I had lost sensation in my body and couldn’t feel any of the injections they gave me. I was also texting people that I was in ICU and called my son’s school and my neighbour, but don’t remember that either.
After 24 hours they moved my baby to a specialist ward and I was moved to Intense Recovery where I gradually started to feel more alert. Initially the nurses took me to see my baby in a wheelchair, but eventually I was able to walk without their support. I wanted to breastfeed him, they thought I was too poorly, but I was adamant.
Every time I itch I wonder if I need a blood test and worry about the ALFP affecting my baby or my liver failing when I get older
I was in hospital for just over two weeks and while I was away my toddler had regressed because I’d just gone to an appointment then disappeared for two weeks. My oldest son’s school said he was really emotional too.
When I was discharged my body was still really swollen because of the retained water and I was so weak and didn’t have time to recover. I came home on a Friday and on the following Monday I had to drop my children off at school. I wasn’t even supposed to be driving but my partner had had his two weeks’ paternity leave and had to go back to work.
I asked for my hospital notes because I was curious to know what had happened and it was only then that I realised how bad things had been. In a follow-up appointment they explained everything and I asked whether the AFLP would scar my liver or come back but they said that once the baby was delivered everything went back to normal. I had more blood tests over the next month which came back normal too. I haven’t seen anyone since – although I emailed the consultant and my midwife on my son’s first birthday to say how grateful I was for all their work and dedication and that it’s been a long year. They were really pleased that I had reached out.
Physically and emotionally traumatised
I’m still physically and emotionally traumatised by what happened and haven’t had time to comprehend it. Every time I itch I wonder if I need a blood test and worry about the ALFP affecting my baby or my liver failing when I get older. Just for reassurance I would have liked a scan on my liver but was told I didn’t need it because my bloods were fine.
There’s nothing that prepares you for this – nothing. I feel quite depressed a lot of the time, but with three children you can’t take two minutes for yourself, you just have to keep going. My mum asks if I’m ok, but she doesn’t quite understand and my partner still doesn’t get why I’m feeling like this. Unless you’ve been through something like it, I don’t think anyone understands so I’ve signed up for a bit of therapy. There is a positive in this though – I’m alive and here for my children and the doctors and nurses learned from me.
I’m sharing my story because we need more awareness of liver disease and the fact that AFLP doesn’t just happen to the first pregnancy. Make sure you know the signs and if you have any, don’t ignore them or just put them down to pregnancy. Speak to your midwife and GP and get yourself checked out.
