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Monday, 13 June 2011

Not a Rare Condition

I had a comment on a previous post about my obstetric cholestasis(OC), about how rare it is.

This is a very popular misconception.  OC is not a rare condition, it affects 1 in 200 pregnancies.  This may sound like quite a small proportion but when you consider that roughly 1900 babies are born in the UK every day, it turns into quite a lot of people.  When you consider that it is routine to inject babies with vitamin K at birth which can prevent a brain bleed in 1 in 10,000 babies, we are prescribed antenatal vitamins with folic acid to prevent spina bifida which can occur in 1 in 1000 pregnancies, it seems unforgivable that OC, a relatively easy condition to control and manage, has such a low profile.

Having OC does not automatically lead on to a stillbirth, in a properly managed pregnancy the risks of stillbirth are the same as in a non OC pregnancy.  The important bit of that sentence is 'properly managed'.  If you do not know there is a problem you cannot take it to your healthcare professional and you cannot be 'properly managed'.  If your medical team ignore your concerns or are unaware of up to date research in the area, it cannot be 'properly' managed.

All the baby books and sites say that itching in pregnancy is normal.  It's the skin stretching.  It could be a symptom of a very rare condition that causes itching but will subside after birth.  (Lets play down the risks!!!)

The problem with OC is the lack of knowledge about it.  I have heard stories of women who have scratched the skin raw because of this itch and doctors have point blank refused to do the simple blood test that is required to diagnose it. 

They don't know why it causes stillbirth.  The stillborn babies have no detectable problems.  They just stopped living. In a post mortem it comes up as 'unexplained death'.  As they cannot as yet determine why OC causes stillbirth there are some people still (I'm talking consultant obstetricians here) who do not believe it does.

http://www.ocsupport.org.uk/   For further information.

Remember scratching can be more than just an itch.

4 comments:

  1. I had never heard of this disease until just last week at grief group when a girl there said she found out that is what she had. She said she scratched and itched so much but had heard other women say there skin itched also and she didn't want to be a complainer. She lost her baby 2 days before her due date do to stillbirth and is so mad she never mentioned it to her doctor now.
    Sucks to hear this is what happened to you also.
    It is interesting to know though that it happens in 1 in 200 babies and it is not as well known to people as spina bifida is. I at least had heard of that before my baby was diagnosed.
    Thinking of you

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  3. I had never heard of this until I read your post, very informative. Sorry about your loss. New follower from the finding new friends blog hop, you can find me at
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  4. Hi, found your blog through another blog I follow. i am very sorry for your loss, here in Canada its called inter colostasis of pregnancy, ICP. I was diagnosed with it i. october with a triplet pregnancy, the main scratching that seperates it from 'normal pregnancy' scratching is if the palms of your hands and bottoms of your feet itch uncontrollably. This is a huge problem!! I am sorry there are dr.s out there wuo dont take ICP seriously.

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