I suffered with Acute Fatty Liver of Pregnancy which was only diagnosed after I gave birth in November 2014, tragically my baby girl died aged 2 days due to this condition. I am totally devastated that this fatal condition was not diagnosed before I gave birth. My symptoms were extreme thirst and excessive fatigue which was ignored by 3 healthcare professionals. Has anyone else experienced AFLP?
Do you know of any support groups for AFLP? Has anyone had a subsequent pregnancy following AFLP?
How awful for you. Devastating re the loss of your baby and terrible that your symptoms were ignored . Ive just done a little research and there is information here on this website (in case you havn't located it) ; it says about how it can occur in the last 3 months of pregnancy. Here is the link.
britishlivertrust.org.uk/li...
Sorry i can't be of any more help, but i hope this information can answers some of your questions.
with best wishes, and here's hoping you can go on to have another pregnancy.
Thank you for your reply. I have done quite a lot of research on AFLP as my own GP's and midwifes had never heard of it. I am still grieving for my baby daughter who was my first baby born at 41 weeks, weighing 9lb 12oz, she was perfect and absolutely adorable. I don't know how I will ever come to terms with this loss of a precious life.
Hi Gemma, i have never heard of it either, not until today when i read your post; how horrendous; its very hard to know what to say; i think this is something that eventually, in time you will come to terms with perhaps, but the loss is terrible; loss is an awful thing and in your case, it must have been such a shock and that was a very healthy weight; Are you having any counselling? or bereavement counselling? This was very, very recent for you, so it will not be easy; I do recommend you seek some sort of counselling and help with your grief. I hope you have family supporting you too? xx
Hello so sorry for your loss. I also suffered with this condition with my third son fortunately for me he survived. I suffered the same symptoms, extreme thirst, fatigue, itchy hands and feet, pale constipated stools and generally feeling unwell. It wasn't until I went to hospital with a small bleed at 36 weeks that a trainee midwife noticed yellowing of my eyes. My son was delivered and spent 5days in scbu. I spent 5 days in intensive care and 5more in high dependency, a total of 14 days in hospital. Most health care people I have seen have never heard of this condition. I have been advised not to have any more children.
As for information there isn't a lot out there and I haven't found any sort of support groups.
I hope you get some support from somewhere and some counselling.
Xxx
Hi Dene, you are the first person I have heard of who has had AFLP, it is such a rare condition, only effects 1 in 20,000 pregnant women. You were fortunate that it was detected before birth to deliver your baby early. I wish this had been the case for me, then my beautiful baby girl would be here today. I was in ITU for 5 days and my baby was in Neonatal for her short 2 days of life. Did you have a genetic test to see if it was a defective gene? This has been suggested to my husband & I. I presume your previous pregnancies were unaffected? May I ask the reason why you were advised not to have any future pregnancies? Was it due to a high risk of reoccurrence. This is my other worry. Did the consultants tell you any reasons to how & why AFLP occurs?
Hiya yes it does seem to be very rare. I haven't been offerred any tests for myself and the advice not to have any further pregnancies is because of the high risk of it reoccurring. My son has had lots of tests in case he has any related problems but so far so good, these tests are to do with a defective gene that we both may carry and passed on but we haven't been tested. I've tried to get answers about how this occurs and about any long term after effects but have had no luck, no-one seems to have any idea. As this was your first baby I wouldn't give up, I have read somewhere of someone having further pregnancies I will try to find this for you.
Xxx
Hi Gemma and so sorry for your devastating loss. Have you tried a forum such as Mumsnet - or would putting a post on there just be too painful.
Hi I found a website called acutefattyliverofpregnancy.co.uk, I hope this might help you xxx
Thanks I have read the articles on this website and watched the TV interview about AFLP on This Morning.
I only wish I had heard about this condition before or during my pregnancy (& my useless GP and midwifes had). I am absolutely broken in pieces over the death of my beautiful baby girl, my whole world and future have been torn apart.
