Tommy’s guest blog, 11/04/2017, by Beth Braine
Sadly, one in four pregnancies in the UK currently ends in baby loss and we still don’t know why in many cases.
Across the past decade more work and more funding is being channelled into finding the answers but some causes and conditions remain relatively unknown.
Beth Braine took to the internet to find out more about Acute Fatty Liver of Pregnancy after the stillbirth of her baby girl Ava. It’s a very rare condition that affects one in every 20,000 pregnancies and is largely unheard of, even in the medical profession.
She was unable to find much information;
‘I have searched the Internet and social media to see if anybody has been through the same situation. I can only find one little article on the British Liver Trust's website, and one group of 250 people on Facebook; this alone tells you how rare this condition is.’
So what is Acute Fatty Liver of Pregnancy?
Acute Fatty Liver of Pregnancy (AFLP) is a condition that typically develops in the third trimester of pregnancy and is extremely dangerous for both mother and baby.
It is more common in a woman’s first pregnancy, if she has a low body mass index and if she is carrying a male fetus, or twins.
The causes of AFLP are unknown and it is incredibly difficult to diagnose as the signs and symptoms can be vague, or often mistaken for another condition altogether.
Our midwife Kate explains,
‘Acute Fatty Liver of Pregnancy is fortunately very rare. It is often very challenging to diagnose as symptoms are often non-specific and can be representative of other pregnancy conditions with there being no specific test that can diagnose the condition. It is so important to be raising awareness of this condition no matter how rare.’
What are the symptoms?
Beth’s symptoms were initially thought to be severe morning sickness.
‘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 over seven times with "hyperemesis" which is a severe type of morning sickness. I kept being told that it would ease off in the 2nd trimester but it didn't. I was admitted on further occasions and was still being told it was just severe morning sickness.’
By the 3rd trimester Beth had lost nearly three and a half stone. She was told the pains in her chest were due to the acid from being sick so much.
One consultant thought that Beth’s symptoms could indicate galls stones and a scan confirmed his suspicions. As gall stones cannot be operated on in pregnant women, Beth continued on the anti sickness medication.
How does the condition develop?
Beth’s symptoms got worse and she began to become extremely thirsty.
‘I was so thirsty but thought that was simply down to not keeping fluids down. I stayed over at my dad’s house as my partner Callum was working and I didn’t want to be in the house alone. Later that day I took myself to bed as I was exhausted, feeling very dizzy and light headed but again just thought it was down to the fact I was dehydrated. I was still being told from the hospital it was severe morning sickness and that some people are unlucky like me and have it all the way through the pregnancy.’
The following day Beth took a turn for the worse and began to see dots and stars when she tried to move from her bed to the toilet. She was also experiencing a loud ringing sound in her ears.
‘We rang the hospital and explained everything that had happened those past two 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 and his wife rang an ambulance as I couldn't get to the car. 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 unable to find Beth’s blood pressure as she lay in bed. As she was still experiencing the high pitched noises and problems seeing, Beth was guided to the stair lift.
‘Next thing I know I've got my legs in the paramedic’s arms who was 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 have collapsed, they still couldn't find my blood pressure as it was so low.’
The paramedics turned on the blue lights and rushed Beth to hospital.
How does Acute Fatty Liver of Pregnancy affect pregnancy?
Beth 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 Beth to check for baby Ava’s heartbeat and sadly could not find anything.
‘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 was to get me stable.’
At this point, Beth and her family still did not know what was wrong and why baby Ava had passed away.
Beth was told that she would have to deliver her baby naturally as a caesarean section could cause her to bleed to death.
After being given pills to begin the labour, Beth delivered Ava.
She was then rushed to the Freeman Hospital as her liver and kidneys had started shutting down and they needed a specialist team.
‘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 can't really remember anything from my time there. But I finally slowly started getting machines taken off of me one by one and things started to get better and I became clearer of what had happened.’
Beth 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% 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.’
Beth has shared her story because she wants people to be aware of this condition.
‘I am not sharing for attention or sympathy, because that isn't going to get my baby girl back. I want to raise awareness for other mothers, as well as midwives, consultants and doctors. I want people to take action and to share this story. We need to be more aware of this horrible condition. I have done my research and now know that 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.’
Pregnancy complications are scary, particularly if they are unusual and there is little information about them. It is important to raise awareness of rare conditions such as Acute Fatty Liver of Pregnancy for the sake of the women who suffer them.
No mother should be faced with this heartbreaking loss and not know why. Please help Beth spread the word and share this article on Facebook, Twitter and Instagram.
If you are feeling awfully unwell then go to your midwife or your hospital and explain your symptoms. Please be insistent and do not worry about wasting time or annoying people. There is no such thing as wasting time when it comes to the health of you or your baby. If you’re concerned that you are not being taken seriously and are still concerned then please feel free to give our midwives a call. The line is free to phone and open from 9 – 5, Monday – Friday. Our midwives are happy to help and give you any further support, advice or information you may need – 0800 0147 800.
I know this is going to be a journey full of emotions, but I also know this is something I need to do. Not only for myself but my partner, my son and to show Tilly that she had a huge impact on the world in the short time she was here.
My world had crashed. My baby could not have died. I was still pregnant, they must be wrong. Nobody is available to help me. What will I tell my Mum? What have I done wrong?
To us, she was perfect and the love we felt for her stronger than I had ever understood possible. In spite of our grief, we would never change our experience of knowing and loving Aisling.
What kept me going was the thought that I was doing this for my daughter Sophie, that I was doing this in her memory.