Heena was on track to have a low-risk pregnancy and birth, and although that changed dramatically in Feb 2023, she wasn’t officially diagnosed with Acute Fatty Liver of Pregnancy until nine months after her baby’s birth. Thank you for sharing your story, Heena
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.
