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June 24 this year would have been the 20th birthday of my daughter Olivia. Sadly, Olivia died just before she was delivered: I was 39 weeks pregnant. As you can imagine, her father and I were devastated when our little girl silently entered the world to be held by us but never to be taken home. Worse still, it was not the first time this had happened to us. We had previously lost a daughter in 1986 when I was 37 weeks pregnant and at the time we were advised that her stillbirth was just 'one of those things'.
But our girls were not 'just one of those things' and soon after Olivia's death I met a new obstetrician who was able to tell me what had probably caused them to die. I had obstetric cholestasis (OC). It transpired that the itching I had experienced in all my pregnancies but which I had been reassured was normal, was the main symptom of this little known condition. Blood tests that had been conducted at the time and which we had also been reassured were normal were not normal and confirmed the diagnosis. Our new obstetrician had to tell us that delivering the baby around 38 weeks was the only way they knew how to manage the condition in the absence of good research and was possibly why Alex, our second child who was delivered at 38 weeks because of the previous stillbirth, had survived. What was so very devastating about being told this was that we had fought hard to have Olivia delivered early because we'd felt that the itching wasn't normal. I soon came to realize that my new consultant was one of only a handful of obstetricians that knew about OC.
Further, there was nothing in the medical text books, no research taking place and no other women for me to talk to. I felt completely isolated. I decided that the only way forward (and for me to be able to cope with what had happened) was to raise awareness of the condition, so only weeks after Olivia died I set up a helpline. Friends were wonderful in supporting me, other clinicians began to listen and OC Support UK gradually evolved. In 1992 I went on to have another pregnancy, complicated by OC yet again but which ended in the safe arrival of my son Tim.
In 1997 I met Professor Catherine Williamson, who heads the Maternal & Fetal Disease Group at Imperial College London. I was able to direct other interested women towards her research and I began formally working as part of the group in 2005. I believe that her research has helped to reduce the stillbirth rate from OC in this country.
I very rarely talk about my background these days, not because it’s upsetting to me but because I hate to worry other women who have the condition who might, understandably, become anxious that what happened to me could happen to them. My story has to be seen in context – it was years ago when nothing was known in this country about OC and these days there are ways to treat and manage it. The reason I have written about my past is to share with you all why I am so very passionate about raising awareness of, and supporting research into, the condition. It’s because I believe that it is vital that this research continues, as although the majority of OC pregnancies will end in the safe arrival of the baby, some will be stillborn.
When you lose a baby you lose all the hopes, dreams and aspirations you had for that child, and I think that a little piece of your heart is taken with them that you can never get back. So I hope that you will support us this year in trying to raise as much as we can for the research at Imperial College London which will enable scientists to continue to strive to protect these babies and spare parents the heartbreak that goes hand in hand with stillbirth.
Jenny Chambers June 2011
