Our baby tragically died at 2 days old because of this undiagnosed condition. We have since had genetic testing to test for defective gene LCHAD, results came back that we do not carry this recessive gene.
I am struggling to find out from my Consultant how AFLP started in myself when I have never had any previous illnesses or liver conditions. Has anyone experienced AFLP or had advice about it? It has destroyed our life and our only precious baby girl. I'm living with this agony everyday and time doesn't heal the grief.
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GemmaLG
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Yes thanks I saw those replies, nothing to answer my questions though. Just wondered if there are any new people using this site who have experienced AFLP. There is very little information about it which makes it so annoying.
I can't understand how a liver condition killed my baby and nobody can explain it. Totally devastated.
What an absolute tragedy your case is Gemma and i'm so terribly sad for you and it's only natural that you are trying to seek out answers to how this could happen or why.
Having read your story and looked up a little bit about AFLP online it is obviously a really rare condition and sadly it accounts for high mortality in both mothers and babies in those affected. You've obviously been tested for one of the most common causes of it being the genetic mutation but I hate to say it along with lots of other genetic, auto-immune causes of damage to the liver there isn't perhaps one defining answer as so why something happens ........ it just does.
The liver is the bodies chemical factory carrying out over 500 jobs, dealing with digestion chemicals, dealing with toxins, hormones and so much more and when something goes out of kilter chemicals can build up and cause damage to the liver itself or in the case of during pregnancy pass the damage to the unborn faetus.
So many folks on here have questions as to why things happened, especially those who know they haven't done anything to cause their own condition and sadly we just have to muddle along and deal with the situation. Yours is an absolutely tragic loss and I can in no way make it better. Some information I found online sort of explains AFLP but I can't answer what triggered it in your case but obviously something did and sadly even the medical professionals may never be able to answer it.
You've probably seen this page before but it sort of explains the chemistry/causes of AFLP and the signs and symptoms which may possibly have led it to have been tested for or treated. Sadly it points out that it occurs in 1 in every 16,000-20,000 pregnancies resulting in around 20% mortality to mothers and 23% mortality in the faetus/newborn.
The only thing which may have helped in your case is if it was picked up early enough to treat you during your pregnancy but the symptoms could so easily be confused with normal pregnancy ones or may not have presented at all. Everyone's liver disease is different and some folks never present symptoms until it is too far on.
I can well understand your grief and perhaps you could be getting some help with that, I know that you need answers but perhaps they will never come and you need to get some help to try and move on with life the best you can. Sadly even getting the answers you seek is not going to bring your baby girl back and you do need to move on with life for the good of your own health.
So very, very sorry for your loss Gemma, lots of love and cyber hugs coming your way.
Thank you Katie for your reply. Do you have a medical background?
I have read the Medscape page on AFLP. I am absolutely devastated that it was not diagnosed before delivery. I went to my GP and 2 midwives the week before I gave birth complaining of excessive thirst and general malaise.
All 3 healthcare professionals did NOTHING about it and allowed my baby to die. I am so angry that I was failed & my baby died due to incompetent NHS staff. I wasn't even offered a blood test the week before which would have indicated abnormal bloods. My baby was perfect, a healthy weight born at full term 9lb12 oz. She lived for 2 days only in Neonatal & I was in ICU for 5 days. I am not coping well & it is now 24 weeks since she was born. The frustrating part is not having any answers as to WHY it happened? I keep asking WHY ME? The stats are 1 in 20,000 so I can't understand how I got AFLP. This was my first pregnancy at 37 years old. I have never had any health issues in my life. It was the first time ever I had been to hospital. My life is now torn apart.
Hi Gemma, no I don't have a medical background other than school biology. Any knowledge i've gleaned is through supporting my hubby who 3 years ago today all of a sudden vomited blood overnight and ended up being admitted to hospital and eventually high care unit where he was diagnosed with chronic cirrhosis, portal hypertension, burst varices and other complications.
He too often asks "why me?" he was 51 and completely tee-total, he only ever got drunk one time at 18 years old and hated the experience and said never again and unlike most of us his never again was just that. He was really active, fit, carried no excess weight and showed no warning signs of any ill health. His liver damage has been put down to auto-immune hepatitis which is also pretty rare on the grand scheme of liver illness (10-17 cases in every 100,000 people across Europe) and his is a weird presenting one since he never really felt ill up until and after the damage was already done. No one really knows why this disease occurs, can be genetic, can be triggered by prescription drugs no one really ever knows.
It would appear that the chance to diagnose your condition was missed, like you say all was well with the pregnancy and baby was fine until this AFLP took hold. Maybe discovering it only a week before birth might have already been too late but it is a real shame that it wasn't picked up and/or the warning signs missed but the symptoms could have been confused with normal pregnancy ones.
I can empathise with how devasted you are, I take it the health professionals involved have never entered into any discussion with you on the subject?
You are understandably still very raw, you perhaps do need some help to try and move on (somehow) and I know that will be really hard with these questions hanging on but as I said earlier sometimes there are no answers, these things just happen and we do in some way have to deal with them and move on. Please seek out some help for your grief and maybe slowly you can move on because it might just be that you can never get answers.
I have been reading your posts and I'm incredibly sorry for your loss after suffering from this Confusing awful disease.
I too had aflp and hellp syndrome that wasn't diagnosed until 39 weeks when I admitted myself to hospital feeling on the brink of death. I nearly died myself but miraculously survived after being in intensive care for 7 days along with my boy who was born healthy after a horrendous traumatic labour.
I still wander why this occurred as had no answers myself but I often find myself trolling the net for new research. I too am under the illusion it's something to do with a faulty gene. and according to research it is the baby that passes the disease through the placenta which makes the mother very ill.
I havnt gone on to have another baby as the thought of going through this again although I had a happy ending scares me to death and my child is now 5 years old. Please message me if you would like to talk about it xx
Thank you Rachel for your reply. There is very little known about this condition, my own Consultant had only seen one other case in 25 years of practice. It is not a genetic cause in my case as we had genetic testing for the faulty gene. It still hurts two years on after the death of my gorgeous baby girl who looked so healthy at 9lb 12oz. There doesn't seem to be any other support groups either for AFLP.
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