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.”

Chloe had a number of concerns about her health during her first pregnancy, including vomiting and right upper quadrant pain, but was told this was normal. Following the birth of her son, and as a nurse herself she is determined to spearhead change in maternity services. Thank you for sharing your story, Chloe

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!

 

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