baby feet

Yesterday I was proud to be a filmmaker.

Yesterday I made a film I had hoped to make since the day my child was born. That film was on the pregnancy related liver condition OC (Obstetric Cholestasis).

This condition affects 1 in 200 women in the UK, it is a hereditary condition from either parent,  its only symptom is itching usually on hands and feet but call be all over- and this usually happens in the third trimester (although it can start earlier) and in severe cases, can cause stillbirth.

With active management (blood tests whiles pregnant and induction between 37-38 weeks) it is believed the risk of stillbirth amounts to being similar to that of a normal pregnancy-approximately 1%.

I got OC at about 32 weeks. I only itched mildly to start with and when it became more frequent someone I knew who was also pregnant kindly advised I get a test for OC. I’d never heard of this condition, was never made aware of it and was shocked to find I had it. Sadly I was given a lot of incorrect information from my GP who even told me my life was in danger and rushed me to hospital. I shall never forget the fear of that hospital journey, for mine and my unborn child’s life.

Once there, the midwives were baffled by my GP’s reaction and distinct lack of knowledge. Sadly there are many other medical professionals unaware and ill informed about this condition also. I and all women with this condition are not in danger. It was a scary, baffling time for me as it is for many women who have something the doctors and medical professionals don’t know enough about, but research is on going and what is known is important in managing this condition.

Once under the expert care of a Professor at my hospital Queen Charlotte’s, I felt more reassured especially when he confirmed I would be induced at 37 weeks-but of course I was still worried to be so far along in pregnancy to then realise there was a chance (however small) that I could lose my baby.

When I was concerned I had OC and once diagnosed, the website OC Support UK (now known as ICP Support) was vital to me. Every other website and forum worried and concerned me and many did not seem to be based or substantiated by research and fact. OC Support UK is. Every question I had was answered there.

Yesterday I made a film for this charity so women who are in the same position as I was in,  have something to watch when they too need to know the facts and receive advice and support. There is currently no film out there available for women concerned or suffering from OC. Thankfully my child Toddler O was born safe and sound but I know this is tragically not always the case for every woman affected by OC. I hope my film will help alert women to this condition and save babies  in the process.

Not only was it incredible to film interviews with Jenny Chambers, the founder of this Charity OC Support UK and also Professor Catherine Williamson, Professor of Obstetric Medicine and authority on OC amongst others, but I was able to share my own story on camera to help women watching and in making this film and returning to the hospital I had my baby at, I began a somewhat cathartic journey. It made me realise quite how hard that time before O’s birth was, despite how much I tried to lock away that pain and not fully deal with it. Yesterday I did.

Making the film truly helped me to come to terms with some of the emotions and sadness I had stored safely away-by having my interview filmed, it allowed me to fully admit quite what a difficult time that had been. I was too busy surviving at the time to realise, to let myself come to terms with all that worry and concern. I had a cry at the end of the day. I wasn’t sad though. I had been. So very sad in those weeks before O’s birth. Those unknown weeks.

Yesterday allowed me to draw a line under that time.  I am so happy and privileged to be able to use my skills as a filmmaker to create something that will help and empower other women about this condition and most importantly and hopefully save babies’  lives.

Yesterday I was proud to be a filmmaker.

The film is currently being edited and I will post once it is live.

I would like to thank the wonderful cinematographer Paul Robinson for shooting the film yesterday and for Provision for supplying the camera and kit. Without them I could not have made this.

If you are worried or know someone who may have OC, please urge them to request a simple blood test to diagnose this from their GP or midwife. Please see  http://www.ocsupport.org.uk for information and support on this condition.

I will be away on holiday from tonight for the following week. A ‘blogiday’. No computer. No phone. See you soon.

Image ©OC Support UK.

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10 Responses

  1. Jenny Chambers

    Hi Sara

    So sorry to hear you’re having a rotten time of things. I remember those feelings of anxiety and felt very isolated too. Please do check our website out and email me with any questions you may have. I also work closely with Donna from Itchy Moms who is a great support to women in the US

    Reply
  2. Honest Mum

    Hi Sara, I totally understand how you feel. Is your condition being managed? Have you good support there? Please do use the OC Support UK website which has all the current best medical advice and there is also one that Jenny Chambers from OC Support UK is working on with Donna in the US http://www.itchymoms.com/.

    Please stay in touch and if you would like to email me personally you can at mum@honestmum.com

    Hope everything goes well with baby number 2 as I’m sure it will.

    Vicki aka Honest Mumx

    Reply
  3. sara

    i can’t wait to see the film. i am currently 31 wks and 3 days with cholestasis in my 2nd pregnancy. i’m scared sick and though i’m in the US i’m going to check out the UK support site you mentioned. thanks for sharing your story. it’s helped to ease my fears a bit.

    Reply
  4. Josanne

    Well done Vicki.
    Doing film makers and women proud . . . yet again! xx

    Reply
  5. Honest Mum

    @ghostwritermummy thank you for your lovely words, they really mean so much. It was an emotional day and very cathartic. I am so proud to be able to do this and hopefully help many women.

    @Lesley Bown thank you too for your words, it is very reassuring to know it might not happen in subsequent pregancies but the stats are high that it may. I really hope I go on to have another baby and this time I will no doubt feel more confident in knowing so much more about the condition. I hope the film will help educate other women and medical professionals too who sadly don’t know enough about what is known of the condition.

    Reply
  6. Lesley Bown

    HI, I had OC with my first pregnancy which I had diagnosed at 36 weeks and like you was v.frightened as the word stillbirth had been used. Fortunately the statistic that I would get it with future pregnancies didn’t happen with me and I didn’t develop the condition with my 2nd and 3rd pregnancy. Well done for raising awareness of OC, the only reasons I went to the hospital with itchy feet was that a mother at my ante-natal class mentioned it. Can’t wait to see the film.

    Reply
  7. Ebabee likes

    Not understanding something is so scary as you start to imagine the worst. I can’t imagine what it must’ve been like for you but hopefully with the work of OC Support UK, women who have this condition can understand a bit more. Shocking that your GP gave you such a scare though. Look forward to seeing the film.

    Reply
    • honestmum

      thank you @ebabee likes. It really was a very scary time and what OC Support UK do is amazing. Thank you for your kind words. I hope through this film many more women and medical professionals will be greater informed about this condition.

      Reply

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