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Acute Fatty Liver of Pregnancy
About AFLP

 I am not a health professional. All the information displayed below has been gathered from internet pages and my personal experience.

 

There are several hypotheses on the subjet, as you must have noticed. I will not go into the case where AFLP is due to a genetic disorder, because in that case all must have been explained by the geneticist and you obstetrician. However, when I was in hospital and diagnosed with AFLP and Diabetes Insipidus, I was told that there must be a relation between the two... but nobody knew exactly what or how...And I am afraid once I had left I was old news and it wasn't investigated any further. However, hours of "googling" gave me an insight into what might have happened.
 
When chating with women who went through AFLP, I noticed that we all had in common the fact that we also had diabetes (purely pregnancy related) and one american study I found (seems the americans know much more about it...), they think that possibly (as it has not been proven yet) that a women who gets diabetes insipidus (not sure with Mellinus) has more chances to end up with an AFLP.
 
Diabetes in pregnancy is quite common. Well, the Mellinus type is. But DI is more unusual and can be undetected until the nurses realise than your catheter bag is filling up way too much in comparison to what you are drinking, and god knows you are drinking like never before... DM is also called the sugar diabetes; as DI is called the water diabetes. Basically, the stalk between your pituitary gland and your brain is atrophied. Thus, the hormones which regulate the volume of fluid you pass compare to your fluid intake, can not do their job and give the relevant information to your bladder. So you are being given DdAVP, which is a preparation of Desmopressin the man made hormone replacement. DI means that you start getting more and more thirsty. It becomes almost an obsession... You travel around with a 1L bottle or two, starts drooling aver fruit juices at the supermarket and it seems that no matter how much you drink you are still thirsty... When you eat, your food taste dry, and tasteless... Like chewing cardboard... And you feel like most of your day is spent in the laddies room (you need hand cream because you wash your hands like 20 times a day!!!)
 
Some researchers think that the build up of Vasopressin (the hormone that has become unused) happens in the liver region. The build up could be proportional to the size of the placenta... Which I guess is why most of the AFLP sufferers are pregnant with multiples. The liver ends up surrounded by fate. Acid is then produced to brake it down. The acid goes through the placenta(s) and attack mother and baby's main organs (heart, brain...). Consequences: the mother suffers abdominal pains (often called heartburns until AFLP is diagnosed!!!), anorexia (well, the food taste dry and anything you eat will provoke terrible acidic pains in your stomach...), vomiting, feeling sleepy (but then again you are being kept awake by your stomach pains, and your severe thirst...)... then you become right down comatose... By then if you have not been diagnosed, your baby(ies) is/ are experiencing distress in the womb, with a heart rate falling down, then going flat. You slip into a coma, experience a liver failure, then it is death. An emergency C is the only cure to AFLP. However, the liver has been producing anti-coagulant enzymes. Which means your chances to bleed to death are still important. You might also need a liver transplant.
 
In America, AFLP has been studied much more, and women pregnant with twins are being screened for AFLP automatically. And it is believed that a prevention treatment of DI will significantly lower the risk of AFLP. So, DdAVP is given to pregnant women with DI of pregnancy.
 
There seem to be a very slight chance of recurrence for AFLP, unless you get pregnant with multiples, or unless the causes of your AFLP was genetical (you can ask for your child(ren) to be tested for long-chain 3-hydroxyacyl coenzyme A dehydrogenase (LCHAD) deficiency, if it has not been done yet). However, your endocrinologist will tell you if he thinks that your DI might be recurrent in future pregnancy. In which case you might want to ask him what the plan will be for your next pregnancy. I am sure he will suggest a close watch from 33 weeks on, and a course of DdAVP if necessary. In my case, the MRI scans revealed my pituitary gland is abnormal in shape, which could explain my DI... so my chances of DI is more likely.



About Me
 
I am happy to say though, that my recovery was one hair short of a miracle (especially since I got Bell's Palsy two days before delivery: because of my liver problems Sasha got herpes, and herpes or cold sores can cause Bell's Palsy... ). My liver fonctions became normal again after a couple of weeks and I stopped DdAVP after 6 weeks. I didn't have to go through a Water Deprivation Test to check on my DI, thank god for that!
 
My waters breaking at 37 weeks was a life saver for me. Unfortunately, my babies had cardiac arrest while I was being monitored. By the time they were delivered by emergency C, Micah suffered a grade 3 HIE (Hypoxic Ischaemic Encephalopathy = lack of oxygen to the brain) and died when he was 6 days old due to extensive brain damages. Sasha had a grade 2 HIE and now suffers from what seems to be a mild form of Cerebral Palsy and has developmental delay, so he needs special help (physiotherapy, hydrotherapy, Speech and Language Therapy...). I spent 3 weeks in hospital, half of it in a bed because my C section had to be re-done due to blood clotting. Sasha stayed 1 months and 1 day in the Neonatal Unit.


About You
 
AFLP affect the whole family because it can be so life threatening. I would suggest you to be reffered to a clinical psychologist... It can really help you or your couple to go through traumatising times. Don't bottle things up and speak to your partner/ spouse about what happened, how you feel... It will make your relationship even stronger, and you might discover a side of him/ her you had never seen before.
 
And if you want to talk to me, please do not hesitate. Send me an e-mail..


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