In what I often think of as my former life I was a Building Society manager. I never meant to be a Building Society manager. I would have liked to act but I didn’t have enough belief in myself and crumbled when I failed my first ‘big’ audition at the Bournemouth Playhouse. My friend from school was MUCH better than me to be honest and she got the part. I didn’t react graciously (oh, the shame).
Then my father moved us from Poole to Canterbury with his work. But at 16, I’d had enough moves to new schools (he was originally an Army man), and I walked out of college on the first day of enrolment. I ran away (to Poole) but was frog-marched back to Canterbury where I refused to do my ‘A’ levels and got a job at WH Smith. After 18 months I was bored stiff and went to Marks & Spencer as part of their trainee programme for managers. None of this was enough to keep me in Canterbury and I left home at 19 and went back to Bournemouth. I took the first job I could find which was as a Building Society cashier. Three years down the line I was lucky enough to get a new Assistant manager who asked me why I was still a cashier. Eighteen months later I got my first post as a manager for the (then) Anglia Building Society in Four Oaks, Sutton Coldfield. I told all our friends we’d be back after 18 months, but 32 years later I am still in Sutton Coldfield as I love Birmingham!
I became pregnant in 1986 and had every intention of going back to work.
I never did. Victoria was stillborn when I was 36 weeks and 5 days. We were devastated. No reason could be found and I was so full of grief I couldn’t focus on going back to work. It took a full year for me to become pregnant (another shock as it had been so easy the first time) and I decided to go to another hospital for my care. The midwives at my local hospital had been fantastic but I couldn’t face going back. Just as I noticed that I was itching as I had in my first pregnancy I fell and broke my knee cap. You can’t see it clearly but that’s me in a plaster cast (and scratching!). I was to spend the remaining six weeks of my pregnancy in hospital but was allowed home at weekends.
Alex was born at 38 weeks and I thought all my Christmasses had come at once.
In 1991 I was pregnant again and once more I itched but was reassured it was normal. I was told that all the blood tests I’d had with Alex were normal and the ones they performed in this pregnancy were too. We kept asking for a 38 week induction because I felt something wasn’t right but were repeatedly told that there was nothing wrong with me.
To cut a long story short I never got to take this baby home either. Olivia was stillborn when I was 38 weeks and 6 days. I genuinely didn’t know how I was going to survive.
But I did survive. And I was finally given the diagnosis of intrahepatic cholestasis of pregnancy (ICP), also known as obstetric cholestasis (OC). I had to be told that all the tests I’d had done were NOT normal and that I should have been induced at 38 weeks. I think you can imagine some of the emotions that we felt. I pursued this with the hospital and the best thing they ever did was to apologise and admit they’d not listened to me.
I remained with Judith Weaver, the obstetrician who’d diagnosed me and also went under the care of a liver specialist, Elwyn Elias. I became pregnant a year later. The plan was that at 30 weeks I would go into hospital and stay there until the baby was born. I think that’s the time when I began to realise what research was all about. I volunteered to give blood, urine and placenta – I would have done anything if it helped doctors to better understand the condition that had robbed my of my daughters. I got very used to having my blood drawn on what seemed to be a daily basis but I’m sure it wasn’t! After trying one drug that didn’t work I agreed to the take what I already knew was the second choice, ursodeoxycholic acid (UDCA). It did appear to help my liver function results (no bile acids then – my blood was stored and tested later) but it wasn’t able to do much for my mental wellbeing and at 34 weeks and five days it was decided that enough was enough and Tim was delivered by cesarean section in December 1992.
He had breathing issues and spent a week in special care before being able to come to me in a transitional care ward. After a further week I got to take him home. I still remember that journey to our house and my mum bringing Alex to the front door to greet us. I sobbed. Poor old mum was bewildered – she couldn’t understand why I was crying, but it was a mixture of relief, grief, happiness and a whole heap of other things coming out.
During that time I’d began to raise awareness of ICP, first through magazines and then we got lucky with a feature on ‘Trust Me I’m a Doctor’ by the BBC. That really helped get it noticed. I also set up a support and information line for women who thought they may have the condition. In those days just getting a doctor to take the itching seriously was a huge deal. I had a few calls from irate doctors who told me to stop frightening their patients as I was talking a load of rubbish (I’m paraphrasing). It was an interesting time!
I was then asked to speak at a medical conference and met Catherine Williamson (pictured below in the middle) who was training to be an obstetric physician in London. By this stage I was actually working part-time at my local hospital as a phlebotomist (takes blood) because a friend had suggested that, ‘if you can’t beat them, join them’, after seeing a job advertised for one. The idea was that working inside the NHS might help me get to talk to the right people.
Meeting Catherine was a huge turning point. Although Judith and Elwyn were conducting research into ICP it wasn’t their main focus. Cath had already made the decision to concentrate on metabolic disease in pregnancy and again, to cut a long story short, I went from directing women her way for research (all with ethical approval) to becoming part of her team. The team has changed over the years, but this is the current line-up.
My biggest thrill was the first time that I started to process samples in the lab. I am sure that my pipetting style wouldn’t win any prizes but Dr Pete Dixon (the only bloke in the photo above) was very patient when he was teaching me. Although a lot more of my time is spent making sure our studies stay compliant with all the regulations involved in research I do still have to don a lab coat every now and then.
I now work part of the week for Cath and part for the charity. Last year the Trustees applied to the Charity Commission for me to be CEO and after a rigorous process the Charity Commission approved the appointment in April 2017. I am also a trained (but non-practising) counsellor.
I have another life as Jennifer Kingston, wife of Ian, a post I accepted in 2012 (somewhat to my surprise as I never thought I would marry again) with much delight. But that’s another story…
Jenny Chambers – 24 June 2017