Despite some pelvic girdle pain, I had had a relatively smooth first pregnancy until a few weeks before the birth of my son.

I mentioned that I had not gained any weight and was becoming increasingly thirsty at several appointments with my community midwife, but was told that was ‘normal’. However, the thirst became excessive, I was drinking six to eight litres of water a day, with at least two of those being at night and my thirst was never quenched.

Approximately two weeks prior to delivery I had persistent right upper quadrant pain alongside vomiting, which again I was assured not to worry about. I was told the pain was due to Braxton-Hicks and that vomiting can occur in the third trimester. I also felt lethargic and uncomfortable, and lack of appetite which caused me to lose 3kg in two weeks – all of which I believed was due to being heavily pregnant.

Although I am a nurse myself and felt as none of this was normal, I believed and trusted the maternity services and professionals.

Six days before the birth, I attended maternity triage due to increasing right upper quadrant abdominal pain and vomiting. I had my observations taken, CTG monitoring of the baby and had a cervix exam to check if I was in labour. I mentioned all of my other symptoms, but was quickly sent home as their only concern was whether I was in pre-term labour or not.

On the following Saturday I stood in my mother’s kitchen and cried as I felt unwell, uncomfortable and didn’t know how I was meant to continue for another four weeks. Later that day it was noted my eyes may have been a slight yellow tinge, but I was so exhausted I went to bed. I didn’t sleep very well that night – I knew something was wrong but I didn’t know what or how serious it would be.

Jaundice and vomiting

I got up early on Sunday morning and immediately started projectile vomiting. I hadn’t felt my baby move and couldn’t get them to move and I was jaundiced. I immediately rang maternity triage, and unfortunately was told to monitor baby’s movements for an hour and call them back if I was still concerned – the fact I was jaundiced and vomiting didn’t seem a concern. I wasn’t happy with that and called back 20 minutes later to say I was coming in.

The midwife who greeted us at triage knew something wasn’t right and immediately put me on the CTG monitor. The monitor showed my baby was in distress and their heartbeat was dropping. The emergency buzzer was pulled and within 45 minutes of arriving in the car park, my baby was delivered via emergency C-section.

Due to the seriousness of the situation, I was put to sleep for the C-section and my partner wasn’t allowed to be present. Everything happened so quickly and I was scared I would wake up to no baby. Luckily, my son was born relatively healthy – he was transferred to neonatal intensive care for minimal support and care, where he stayed for six days.

However, things escalated and were so much worse for me than we had ever imagined they could be… I had developed Acute Fatty Liver Disease of Pregnancy, a rare but life-threatening problem. It took me several hours to wake up from the anaesthetic and things weren’t right. Not only was my liver failing, but also my kidneys. I had also developed pre-eclampsia despite a normal/low blood pressure throughout pregnancy.

My blood wouldn’t clot due to the liver failure, so I become one big bruise and a very difficult patient to get daily blood tests from.

I was very quickly transferred to Intensive Care (which happens to be where I work). I have no recollection of the next three days, the last thing I remember was being put to sleep in theatre. One thing I do remember was being spoken to by a liver specialist who stated my bilirubin was so high that they had discussed my case with a specialist liver unit as I may need a liver transplant.

Fourteen hours after delivery, I was taken to the neonatal intensive care unit to meet my baby, which sadly I do not remember, but luckily I have videos and photos to see that moment. My baby’s gender had been kept a surprise throughout pregnancy, and I do not remember the moment I found out he was a boy. For the next five days I was wheeled down to spend the day with my son, with an intensive care nurse to care for me.

My blood wouldn’t clot due to the liver failure, so I become one big bruise and a very difficult patient to get daily blood tests from. I had so much fluid in my legs – from my toes to my hips – that even just moving was difficult.

The following Saturday, whilst still a patient in intensive care, I noticed new bruising, pain and swelling on my left lower abdomen which was initially dismissed by obstetric doctors, however the intensive care doctors investigated. My haemoglobin had dropped to less than half of the normal value, so I went for an urgent CT scan. The CT scan showed I had blood in my abdomen, so obstetrics were contacted and I was wheeled to theatre urgently. I had emergency surgery to remove almost two litres of blood from my abdomen that had accumulated due to a small tear in one of the abdominal muscles. I received multiple blood and platelet transfusions.

Trust your instincts

I spent a total of 11 days in intensive care due to a stagnant bilirubin level and the unexpected bleed. Due to my critical illness, my breast milk never came in. I tried to encourage it with pumping, but unfortunately I was not able to.

Every single aspect of ‘normality’ of having a baby as taken away from me, despite the constant reassurance that how I felt and my symptoms were ‘normal’.

I spent the next nine weeks having regular bloods to ensure my bilirubin and liver function returned to normal, which I’m pleased to say it did. I lost 9kg of fluid from my legs, and a further 14kg of weight from what my weight was prior to pregnancy. I believe I was continuously losing weight while pregnant to have lost such a dramatic amount since.

I am recovered and my baby is healthy. But things could’ve have been so much worse had I not trusted my gut on that Sunday as we were told both myself and my son wouldn’t have made it.

There needs to be more awareness of AFLP and education within maternity services. As a nurse working in a large teaching hospital trust, I am now going to ensure this happens and practice changes. I do not want what happened to me, to happen to another woman. I want women to know if something doesn’t feel right, please trust your instincts and I want maternity services to be aware of AFLP and investigate when a women presents with the symptoms!

The post Chloe’s story: “There needs to be more awareness of AFLP and education within maternity services. I do not want what happened to me, to happen to another woman.” appeared first on British Liver Trust.

In 2022, I was a healthy 35-year-old female, on track to have a low-risk pregnancy and birth. Around three weeks before my due date, like so many women in the late stages of pregnancy, I was feeling generally unwell, exhausted, and uncomfortable. Nothing unusual, I was repeatedly told.

A week before my due date, the symptoms intensified, I had no appetite or thirst, and I was severely constipated. I went to the maternity ward but nothing indicated any cause for concern and I was sent home with a glycerine suppository. Two days past my due date and I was itching to get my baby out. I couldn’t shake the feeling of malaise, and was nauseous but drinking a fair amount of liquids. In the evening, I forced myself to have a few bites to eat in case labour started, but I was soon vomiting overnight. The next morning, my husband called the ward and when he told them that I was too unwell to feel if the baby was moving as much as normal, they asked us to come in.

The usual checks of blood pressure, urine and monitoring of the baby’s movements for the standard 10 minutes didn’t show anything abnormal. They checked for dilation of the cervix, but there was none, so we waited while the team debated on the best course of action for induction. It was while we were waiting that a midwife suggested we “may as well” trace the baby’s heart rate for longer. After 30 minutes, my baby didn’t pass the expected results on the heart trace due to having a couple of “sleepy” moments. Still, there wasn’t much concern, and I was taken to the labour ward for intravenous fluids and blood tests.

Abnormal liver function

This is when things rapidly escalated. My blood results showed that my liver function tests were highly abnormal, my kidneys were working in overdrive, and my blood wasn’t clotting properly. No definitive diagnosis was made, but our conditions were deemed severe, and it was advised to deliver the baby immediately. I had been in hospital most of the day with long periods of no information, then it came thick and fast. Despite attempts to explain to myself and my husband exactly what was happening, we had to take decisions fast to preserve both my life and our baby’s.

In what felt like a rapid blur, I signed consent forms for surgery and blood transfusions. While being given blood clotting factors in preparation, I was told that I’d need a general anaesthetic and to spend a few days in intensive care post-surgery for close monitoring.

I felt numb as my brain tried to process the medical conversations, our lack of options, the severity of the situation. I pushed away negative or panicked thoughts as my exhausted body focussed on what I needed to do. I laid all my trust in the professionals and my husband for support. I was scared. I could see fear in his eyes, though neither of us spoke of it. My birth plan could only prepare us so far. We couldn’t go for a walk or discuss it over a cup of tea. I remember wanting to surrender myself to the medical team to get my baby safely out. I wanted my husband to stay with me while the anaesthetic took effect, but that was a small request too much.

At 7pm I was wheeled in for an emergency C-section. My husband was waiting outside the theatre and recalls the scariest moment of his life was hearing the emergency siren call as professionals raced past him. Our daughter required resuscitation, and she was taken to the neonatal unit for support overnight.

I spent three days in ICU, looking jaundiced, with a catheter, a surgical wound drain and several other drips and needles. Reality started to sink in when the head of the ICU explained what had happened, checked if I understood why I was in intensive care and prepared me for the likelihood of PTSD

I was sent to the intensive care unit and woken the following afternoon. My husband came to see me and wasn’t certain that I’d understood that our baby was born. Later that day, I was taken in a wheelchair to visit her for 20 minutes. I spent three days in ICU, looking jaundiced, with a catheter, a surgical wound drain and several other drips and needles. I remember the huge strength and effort it took me to be rolled on to each side of my body for the nurses to change the bed sheets. Reality started to sink in when the head of the ICU came to see me to explain what had happened, check if I understood why I was in intensive care and prepare me for the likelihood of PTSD.

My beautiful baby girl, meanwhile, spent her first few days with her dad in a labour recovery room. He gave her the best love and attention in those days. In the moment, I was happy for it knowing that I was no good for anyone and that she was in the best arms she could be in. Honestly, it was only much later that I felt I’d missed out on a crucial experience.

My daughter and I spent 11 days in hospital before being released home. The entire recovery there was brutal. At first, I had a committee of professionals visit my bedside every day, from obstetric consultants to liver specialists to haematology.  I had constant blood tests, an ultrasound, strong antibiotics and painkillers, an enema, compression boots and so on. I remember forcing myself to find all mental strength possible. From learning to walk in slow, baby steps to the toilet, to breathing through anxiety attacks when I heard the emergency siren ring, to negotiating with midwives to feed and burp my crying baby at 2am and advocate for myself in various steps to my recovery. Even once I was home, I had six weeks of blood thinning injections and a cocktail of medicines.

The story didn’t stop with me. A known, but equally rare, connection with AFLP is that maternal deterioration can sometimes be secondary to a genetic deficiency in the baby, called LCHAD. This is a very rare condition where a person is unable to break down certain fats because they are missing a certain protein, and which can be extremely dangerous to babies if untreated. Through our time in hospital my daughter was tested for, and for safe-keeping, assumed to have this metabolic condition. Her care involved further neonatal and paediatric metabolic specialists, along with genetic testing and a safe management protocol was put in place. Luckily, about a month after her birth, we received the call to tell us that her results were normal and that she was healthy.

All pregnancies are different

From what I understand, no single person’s journey with AFLP is the same and not enough research has been done to know its cause or likelihood of reoccurrence. As with many medical diagnoses, mine was determined based on deduction of other probable causes or diagnosis.

The experience was a rollercoaster and for my part, almost two years on, I am only really starting to process and fully understand the extent of what happened. As I talk to other people, I remember more things or acknowledge small details in my own mind. While everyone involved, my husband included, made huge efforts to ensure I knew what was happening, I could only absorb a certain amount at a time. I was processing enough to prioritise decision making and keep moving. The rest didn’t seem to matter and I didn’t even have the energy to process it.

All pregnancies are different, but I have learned some really valuable lessons though my experiences. I was lucky enough to have a healthy daughter and recover well, and for a long time, I felt nothing but gratitude. I was in pain, but I was grateful. What I realise now, is that I also needed to grieve the missed moments and the missed birthing experience that I thought I would have.

Be brave and speak up if you don’t feel well. Even if the whole world tells you that your symptoms are normal, don’t be afraid to ask questions and get checked if you don’t feel well. And ask whether you might need a liver function test. Also, advocate for yourself – our health service is under huge pressure and these experiences are never easy. Nurses, midwives and doctors can’t be expected to know it all with each shift change. It’s your body and you know how you’re feeling, so ask what’s happening and shout if anything isn’t right or you need more help.

Timely diagnosis is the only cure for AFLP. I still feel that my diagnosis and recovery fell on a series of fortunate moments. Had it not been for these moments, it may not have been caught in time to have the beautiful moments we now have as a family.

The post Heena’s story: “It’s your body and only you know how you’re feeling, so ask what’s happening and shout if anything isn’t right” appeared first on British Liver Trust.

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.

The post Dana’s story: “I asked whether the AFLP would scar my liver or come back but was told that once the baby was delivered everything went back to normal.” appeared first on British Liver Trust.

Around a week before my baby was born I began experiencing nausea, acid reflux and a huge increase in thirst. I figured this was normal pregnancy stuff and nothing to worry about. A few days later the nausea progressed to vomiting and I went to Birmingham Women’s Hospital to get checked over. My skin and eyes had also started to turn yellow.  

After some tests I was told my baby needed to be delivered immediately via emergency caesarean section (c-section). Not at all what I was expecting. I was 34 weeks along and still had stuff to sort out. As the c-section was under general anaesthetic my partner couldn’t be present so we said our goodbyes and off I went.  

I woke up 3 days later in the ICU next door at the Queen Elizabeth Hospital to photos of my newborn hanging in front of me. I had a touch of delirium and didn’t fully grasp the situation. I was adamant a swim in the (non-existent) swimming pool was crucial to my recovery, and I was also keen to get on with work emails. I’m glad I wasn’t able to access them!  

I came to learn I had a rare life-threatening condition called acute fatty liver of pregnancy (AFLP). The cure is delivery of the baby. It’s a bit of a misnomer as it isn’t just the liver which is affected. In addition to having liver failure, I had a degree of kidney failure and low platelets. The platelet issue meant my blood wasn’t clotting properly; this led to a severe abdominal haemorrhage after the c-section requiring further surgery and blood transfusions.   

My situation was as bad as it could get, but I had the easy experience as I was out of it the entire time! My poor partner was told at one point the limits of what could be done for me had been reached. My mum faced the prospect of losing her daughter, and just a few months after losing her husband (my dad) unexpectedly. 

Thanks to the incredible work of everyone who cared for me I pulled through. A surgeon asked if I remembered hearing ‘Never Gonna Give You Up’ – the song had started playing nearby while I was being worked on. Expert “Rickrolling” from the universe.   

My body was unrecognisable, having ballooned up with kilos of fluid. Fluid on my lungs meant I needed CPAP (continuous positive airway pressure) and oxygen support. A line of staples ran the length of my abdomen. I had high blood pressure and blurry vision. Just rolling onto my side was a gargantuan effort. 

I met my son for the first time 5 days after he was born. I don’t really remember it but I do have photos of us blinking blearily at one another like ‘what just happened?’ Fortunately, he had been delivered before the condition affected him (it can be fatal for the baby too) and he only spent a week in the neonatal ICU. 

All the staff involved with my care were wonderful; I was even treated to a bed-based hair wash and blow-dry. I remained in hospital for 3 weeks before leaving in a wheelchair and spending another 4 weeks recovering to the point I could start looking after my baby. And there’s nothing like a baby to build your muscles back up! 

It’s been cathartic writing this but most importantly I hope it helps raise awareness. Timely diagnosis of AFLP is difficult as the symptoms are so non-specific, and I didn’t even develop symptoms until the situation was advanced. Additionally, AFLP can also be confused with preeclampsia and HELLP (hemolysis, elevated liver enzymes and low platelets) syndrome as a number of features overlap.  

My advice to anyone concerned about their health is to push to be seen and investigated if things don’t seem right. I’m eternally grateful to the medical professionals for recognising what was happening and ensuring that I was seen to urgently. I was very lucky to have been treated where I was; the site has strong liver and multidisciplinary expertise. Not all hospitals are able to treat the condition.  

6 months on my midsection is absolutely not what it was, but all the important things like my liver are back to normal and I have a lovely little boy. I’m overjoyed I get to be a parent alongside my partner. 

The post Jessica’s story: “Timely diagnosis of AFLP is difficult as the symptoms are so non-specific, and I didn’t even develop symptoms until the situation was advanced” appeared first on British Liver Trust.

I count my lucky stars that my son arrived earlier than expected.

A few weeks before I went into labour I started feeling really unwell. I had pains in my tummy and shoulder, I felt sick every time I ate and I was really thirsty. I was drinking litres of water at a time –  nothing would quench my thirst but my urine was always dark.

When I’m ill I usually suffer in silence but this time I was in so much pain that I spoke to the midwives. They said it might be trapped wind and to try drinking mint tea. I took wind tablets but nothing eased the pain. Then the vomiting started too.

Hospital

I’d planned to have a c-section but my waters broke early. I’d been feeling terrible all day with the pains in my side and shoulder. The pains were completely different to the contractions I’d felt with my previous two pregnancies. They were so close together and strong that my partner took me straight to hospital. Due to the pandemic, he had to wait outside in his van.

When I got to hospital a midwife examined me and said I was fully dilated so I couldn’t have a c-section. I learned later that if the operation had gone ahead, I probably would have died.

I got taken into the delivery suite and then started to push, my baby was struggling and his heartbeat kept dropping, a doctor came to help and I ended up having forceps delivery. My baby was perfect.

Jodie-Ann and her son

Unfortunately my placenta wouldn’t follow so I went into theatre to have it removed. In recovery, my temperature was really low. Back on the maternity ward, my partner asked one of the midwives why I looked yellow. She said it was just the lighting in the room but he said it wasn’t and he’d noticed it when I was in labour.

A doctor came and took some blood from me, then the sickness started again. It was awful. Not long afterwards some doctors came back and explained to me that I had acute fatty liver of pregnancy and it was a very rare disease. They said they weren’t sure how to treat it and they would have to get in touch with Leeds hospital.

My partner had to leave due to COVID restrictions so it was just me and our baby. A while later, midwifes explained to me that I needed to go to the acute medical ward and my baby had to go neonatal as he wasn’t allowed with me. It was so sad leaving him after only having him a few hours earlier.

On the acute medical ward I started to feel even worse. I was bleeding heavily, being sick and I was really weak. I passed out in the bathroom, I was woken up by people shouting me trying to bring me round. The next day I went for a scan and confirmed I had fatty liver. The liver condition was causing my blood not to clot so that’s why I was bleeding so much all the time.  Over the next few days I was given medication on a drip to try and clot my blood and 6 units of blood. I had another operation to remove something that was still in my uterus.

Recovery

I was in hospital for a week afterwards before I was allowed to go home. Since then I’ve gradually started to feel better. I’ve been for blood tests every week at my GPs for months. My consultant says my liver is back to normal.

I didn’t realise how rare this condition was and that’s why I want to share my story. I count my lucky stars that my son arrived earlier than expected as I was told that if the c-section had gone ahead I would have died because my blood wasn’t clotting properly. This baby will be my last – I’ve been told I might get the condition again and it could kill me.

The post Jodie-Ann’s story: “My partner asked one of the midwives why I looked yellow.” appeared first on British Liver Trust.