#stillBORN Campaign - Ava's Story

My story – We lost our daughter in October 2016. Now 5 months later and still not yet fully understanding what, why or how this happened I want to share my story to raise awareness of Acute Fatty Liver Of Pregnancy.

I have searched the Internet and Facebook etc to see if anybody has also been through the same situation and I can only find 1 little article on the British liver trust’s website and 1 group of 250 people on Facebook: this alone tells you how rare this is. No matter how rare something is it should be known about to stop things like this from happening to other families. This occurs only once in every 20,000 pregnancies and they still aren’t fully aware why this happens. I’m currently speaking to a lady from the British Liver Trust trying to arrange something to raise awareness, hopefully there will be an update soon.

I had a really horrible pregnancy from the very beginning. With sickness, drastic weight loss, couldn’t eat or keep fluids down. I was admitted into hospital 7+ times with “hyperemises” which is a severe type of morning sickness. I kept being told that it would ease off in the 2nd trimester, it didn’t. I was admitted on further occasions and was still being told it was just severe morning sickness. I was given many different types on anti sickness and they didn’t seem to work. In the 3rd trimester (still just as poorly if not worse) I had lost nearly 3 and a half stone. I had started to get bad pains in my chest which I was told was just the acid of being sick so much. It was getting worse and finally a consultant explained it could be gall stones and he would do a scan on me. Later that day I had a scan and was confirmed I had gall stones. They cannot remove these during pregnancy as they can’t operate. So they proceeded with the anti sickness and antacid for the heartburn / gall stone pain. I still at this point couldn’t eat or keep fluids down. I stayed over at my dads house as Callum was working and I didn’t want to be in the house alone. I was so thirsty but thought that was simply down to not keeping fluids down. Later that day I took myself to bed as I was exhausted, feeling very dizzy and light headed. Again just down to the fact I was dehydrated. Still being told from the hospital it was severe morning sickness and some people are unlucky like me and have it all the way through the pregnancy. – the next day I went to Aldi with my dad & his wife, I was in the wheelchair as I was that weak and tired, I got back to the car and was sick again. I got straight to bed when I got in the house. Later I went to attempt to go to the toilet and stood up but couldn’t see and had loads of dots and stars but also a loud ringing in my ears. We rang the hospital (maternity assessment unit) and explained everything that had happened those past 2 days and they said to make our own way into the hospital to get checked out. I again tried to stand up but couldn’t see and could hear a very high pitch noise, so my dad & his wife rang an ambulance as I couldn’t walk to the stair lift to get into the car to go to hospital. I spoke to the operator and explained my symptoms and within minutes the ambulance arrived. This is where I start to loose bits of my memory and time frame… the paramedics were talking to me as I lay in bed and were trying to find my blood pressure but were unable to do so. They tried to get me to stand but again, the high pitch noise and no sight came back but I was guided to the stair lift. Next thing I know I’ve got my legs in the paramedics arms lifting them to try and bring me round as I had a fit/passed out on the stair lift. I was shouting as I still couldn’t hear properly. I was then taken into the ambulance.

The paramedics tried to fit a canular into me for some fluids but my veins had collapsed, they still couldn’t find my blood pressure as it was so low. We eventually started moving and were on the way to hospital, I kept dosing in and out of sleep, but as my dad said something wasn’t right at all so the paramedics turned the blue lights on and rushed me to hospital. I arrived and was taken into a room in the maternity assessment unit. More doctors and midwifes were trying to find my blood pressure, the room soon became filled with many different people all trying to work out what was happening and get me better.

A midwife put a heartbeat monitor on me to check for Ava’s heart rate… nothing…. I knew the second they put it on, that her heart had stopped beating. I remember a nurse telling me that she hasn’t made it and that they were all so sorry and that their main concern is getting me stable. I then got transferred to another room with lots of doctors and nurses again all sticking needles in me trying to find veins. I can’t really remember much from here as they pumped me with lots of drugs. I had a needle in my neck with different parts to put medicine in. At this point we still didn’t know what why or how. It was a long day and I was going to soon have to deliver Ava naturally as if I had a C section I could bleed to death.

After having several tablets to start me off I finally delivered her. We then got transferred from the RVI to the Freeman hospital, this was because my liver and kidneys had started shutting down. They needed somebody with a specialist team incase anything worse happened. I had a catheter and was being monitored very closely, I was given anti biotics and other drugs to try and recover my kidney and liver. I was told if my kidney didn’t repair I would have to go on a dialyses machine.

I was in intensive care at the freeman for a few days and it was very touch and go. I nearly lost my life… I can’t really remember anything from my time there. But I finally slowly started getting machines taken off me 1 by 1 and things started to get better for me and I become clear of what had happened.

I got transferred back to the RVI and was told by a consultant that the reason for all of this was something very rare called Acute Fatty Liver Of Pregnancy. I had never heard of this until now… I still wasn’t 100% sure about it and had a million questions I wanted answers for. Why after all the time I had spent in hospital had nobody mentioned this or that I had symptoms for this? Yes it is rare but surely it is better to rule something out than just not bother at all.

The reason I have written this post is because I want people to know and read my story, I want people to take action and to share this. Not for attention or sympathy, because that isn’t going to get my baby girl back. But simply to raise awareness to other mothers, midwives, consultants and doctors. This needs to be made more aware of as I have done my research and now after reading other cases it could have been spotted earlier and my girl could have made it!! Let’s raise awareness of this disease and hopefully help people in the future! #AFLP

Beth Braine