OC Support UK^TM

When Louise Pollard had her first baby, Annabel, this year she was shocked to be told by the midwife that 15 years ago the outcome could have been very different.

As it was, Louise’s pregnancy had not been easy. She had suffered a lot of sickness and tiredness, but was reassured that this was normal in pregnancy. In the third trimester, though, her symptoms became worse and she also noticed some itching, particularly on her chest and torso. Once again she was assured that this was normal and due to her skin stretching. But Louise couldn’t shake off the belief that something wasn’t right.

At 38 weeks of pregnancy she noticed that her stools had changed colour, and when she suffered a particularly bad bout of vomiting one night she went to her hospital’s day assessment unit. There she had some blood tests and a trace of the baby’s heartbeat was taken. At first there was some confusion over the results, with Louise being reassured that everything was ‘fine’, but at the same time she was told that all the tests weren’t back and she would have to wait a few days.

Nearly a week after the initial blood tests Louise and her husband were called into the hospital, given a leaflet on OC and advised by doctors that she needed to be induced. 42 hours later Louise gave birth to Annabel, who required resuscitation by oxygen and facial stimulation. Annabel subsequently developed jaundice and needed phototherapy treatment.

Since Annabel’s birth Louise has learnt more about OC and wants to help raise awareness and money for research into the condition. She is therefore going to be taking part in the Great South Run on 25 October. You can sponsor her in this fabulous fundraising event by visiting http://www.justgiving.com/loupollard/. All money goes directly to OC Research at Imperial College and it would be wonderful if Louise could hit her target of £500!

Louise writes after the run

Having not taken part in any long distance running since cross country at school (some fifteen or so years ago), I was slightly apprehensive about managing to complete the Great South Run! However, I can honestly say it was a walk in the park compared to labour! We were blessed with favourable weather for taking part in this fantastic event.  Taking part in the Great South Run in support of OC meant a great deal to us – a sincere thank you for everyone’s sponsorship and support. 

Annabel and Louise Pollard

Karen Cope has been fundraising again for OC research. Following last year's successful 'Day at the Races' she organised another trip this July. Says Karen, "We took two coaches to ladies day at Stratford races and raised £500 for OC this year. There aren’t many photographs as we weren’t blessed with the best weather! But everyone was just as generous and just as gorgeous, and we all had a fantastic day. Here’s to next year!"

Facts about my cycle ride

Seven hospitals in four counties, three local radio interviews, two local press articles, eleven cycling companions, 208 miles cycled over eight days (non-consecutive), 250 leaflets distributed and a hundred friends, relations and acquaintances who have donated £1,880.

Figures about obstetric cholestasis

There are 4,500 pregnancies affected by obstetric cholestasis each year in this country, of which about one per cent may result in stillbirth (but this figure could be higher if the condition is not ‘actively managed’, which means the use of UDCA, regular blood tests and delivery around 37-38 weeks). Most of the hospitals I visited will have about 5,000 births a year with between 5 and 10 cases of OC per 1000. These mothers will experience not just the unbearable itching, but also the anxiety of wondering what might happen to their unborn baby.

My aims and inspiration

I set out with two aims: to raise awareness of OC among pregnant mums and to raise money for research into OC. I have succeeded in these two goals, but more than that I feel that I have also succeeded in overcoming the grief caused by our first baby’s unexplained death. Joseph would have been 33 this year, so I decided to start my cyclethon on 13 February, the anniversary of the day he was stillborn.

Eight years ago I came across an article by Jenny Chambers describing her own tragic loss of her two baby girls, which was the turning point. I realised that the symptoms she described, severe itching on hands and feet, especially at night, were those I had experienced when I was pregnant the first time. This led to me finding from my hospital records that blood tests taken at the time showed I had raised levels of liver function and bile acids. The consultant did not realise the significance of this, as 33 years ago the knowledge of OC was not available here.

I was inspired by Jenny’s sterling fund-raising effort to walk the Great Wall of China to try to do something myself. When I attended the OC conference in London in 2006 I met a young mother who was going through the agony of wondering how she would cope with a second  OC pregnancy and another who was pregnant again following a stillbirth caused by OC. I also learnt that OC can occur in daughters of sufferers, which made me realise that I would have to pass this information to my daughter.

My family

By great good fortune I went on to have a daughter, Charlotte, and a son, Samuel, without experiencing the nightmare of itching during my pregnancies, although I did have very hot, uncomfortable feet as well as high blood pressure towards the end of my pregnancy with Samuel. When Charlotte and Ian were about to get married in 2007, knowing they were planning to have a family, I warned her that there was a slight chance that she might get itching during pregnancy and that would be a sign of OC. But I hoped and prayed it would not happen. When she got itchy pins and needles in her hands and feet at 36 weeks it was time to get liver function and bile acid blood tests done urgently. A couple of days later she was diagnosed with OC and at 37 weeks her consultant at the Norfolk and Norwich hospital arranged for her labour to be induced. After a fairly smooth labour she gave birth to their beautiful baby daughter Abigail, who weighed 6 lb 4 oz.

Andy, Charlotte and Abigail

Abigail is now nearly five months old and is the pride and joy of her parents and four grandparents. My fund-raising cyclethon for OC research is a celebration of her birth, as well as a memorial to Joseph. I am very grateful to everyone who has contributed in any way to my sponsored bike ride.

The money will go via the Institute of Obstetrics and Gynaecology Trust Fund towards research being done at Imperial College, London. Donations can be made at http://www.justgiving.com/andysocbikeride or contact me at a.edgecombe@talktalk.net.  Information on OC and fundraising is here, or contact Jenny by email at JennyChambersOC@aol.com.

Andy Edgecombe - April 2009

Earlier details about Andy's ride

Some of you may already know that Andy Edgecombe is raising money for OC research at Imperial College. She is planning to do this by cycling to seven maternity units near to where she lives: the total mileage she covers should be around 200 miles. She has already visited West Suffolk Hospital (see article below) and Colchester.

Jenny Chambers and Rachael Rawlings from OC Support together with midwife Mervyn Jerritt were at Colchester on the 21st February to meet her after her ride and to congratulate her on her efforts. Andy has also produced a leaflet about the condition that she is asking hospital staff to display in their antenatal clinics.

Andy with midwife Mervyn Jerrit at Colchester Hospital

Jenny with Andy at Colchester Hospital

Added on March 9th: Andy continues to do well with her bike ride and on Saturday 7th March she cycled to the James Paget Hospital on the next leg of her 'cyclathon'. She was accompanied by her son-in-law, Ian and the photo's below show her taking a well deserved break with Ian and presenting the leaflets she has written about OC to one of the midwives from the maternity unit.

Andy with Ian

Andy, midwife and Ian

Added on 2nd of April: Andy's next stop in her cycling tour was the Norfolk & Norwich hospital. She visited them on the 14th March and received a very warm welcome. Andy said in her email to Jenny Chambers, "They were very welcoming , we even went up to the ante natal clinic, where the midwife in this photo was in the middle of dealing with an OC patient!" Andy finished with, "I am whacked (she actually said something else but we had to censor it.....), time for a hot bath. But it was such a lovely spring day, so I really enjoyed it". Well done Andy, we are all really proud of what you are doing!

Andy with midwife and manager

Andy's next stop was to visit The Rosie in Cambridge on the 21st March.

Says Andy, "En route in Cambridge I met a plastic surgeon on his bike, who asked about (the bike ride), due to my tabard, and I gave him a one minute summary, he was interested as his wife was about to produce!"

Andy at the Rosie. The photo is of Andy with Rosemary Course, Lead midwife, midwifery led Birth unit.

Andy's final stop was St Elizabeth's at King's Lynn. It was the end of a long hard road for Andy who reported, "I am looking suitably shattered after 34 miles and the grey hair is evident too! Lucky the sun shone again and almost flat roads through quiet forests and lanes". The picture is of Andy with her husband Hugh, who has supported her from the beginning of this cyclethon. I know that without his support, encouragement and practical help (he collected Andy and bike each time to take her home) she couldn't have considered doing this event. So, thank you Hugh!

Andy's final stop.

Andy hopes to write a fuller report of her time spent on a bike and we will bring this to you as soon as she is recovered enough to put pen to paper!

Andy rides in memory of her son Joseph who was stillborn 33 years ago. It was only after Andy saw an article about the condition a few years ago that she was able to find out why Joseph had died.  It also meant that she was able to recognise the signs of the condition when her own daughter started to itch in her first pregnancy last year. Her daughter was subsequently diagnosed with OC and gave birth to a healthy daughter.

If you would like to contact Andy about her bike ride you can do so by emailing her at a.edgecombe@talktalk.net or if you would like to sponsor her you can donate online through her justgiving site http://www.justgiving.com/andysocbikeride

It will fabulous if you can support Andy. All money donated will go directly to the research being conducted at Imperial College and when has completed her ‘cyclathon’  we will report back on just how much she raised.

Many thanks to Karen Cope who, together with family and friends, raised £300 on 20th July 2008 for OC support. They went to Stratford Races Ladies Day, on 20th July 2008. Says Karen, "Everyone looked lovely all dressed up and there were hats and fascinators a plenty. I organised the trip and most of the people on the coach knew me and so they were all happy to buy a raffle ticket for this cause as most saw me pregnant twice with OC. The prizes were donated by friends and family, my dads business donated a spa break at the Belfry which was lovely. I am so grateful to everyone that donated or bought tickets and we had a fantastic day at the races too. Hopefully the first of many fundraising outings, well any excuse!!!"

A very big thank you to Mark Delaney and his partner Claire Walker who have given the OC team over £5,000 to help support the research programme. Claire developed OC in her pregnancy and baby Thomas had to be delivered just before 36 weeks. He spent a week in special care but is now thriving and, as you can see from the photo, obviously hopes to follow in his dad's footsteps and play football for Aston Villa! Mark has now retired from football due to knee injury and we want to wish him and Claire all the very best for the future.

On the 26th August last year we had a wonderful evening to raise money for the OC support and research team. After our baby died at 39 weeks pregnant in 1999 our lives were turned upside down. When the doctors told me Danny had died, part of me died too. I dealt with my feelings by turning this very negative thing into something positive. This was to be our 3rd fundraising evening since losing Danny and we were very lucky - we sold all 500 tickets. The catering staff and hall hire was given to us with a huge discount after they had read about the condition and how many families it affects. I wrote to about 100 companies asking for donations or raffle prizes. We received great items like an electric guitar and a DVD player. We were also given lots of sports items like a signed West Ham ball (which got £400) signed boxing gloves and golf goodies, that we used for an auction which created a great atmosphere on the night. The band and disco even reduced their fees to help make the total raised the highest possible. We also had a visit from Jimmy Bullard who plays in the premiership for Fulham, he auctioned off a shirt he’d played in that day which raised a further £200. Standing on the stage ready to announce the amount raised which was just under £7000, I felt a great sense of achievement. Jenny Chambers was with us on the evening, and I felt in a small way, it was our way to say THANK YOU to her and all the great staff in the support and research team. Since losing our special baby Danny we have been so lucky and now have Alfie 6 and Rosie 3. Yes, I had OC with Alfie and Rosie but with the great help from Jenny, Dr Catherine Williamson, the team and of course Urso the outcome was so very different and now completes my very much wanted family along with George who is 9. Both my husband (Dean) and I will continue to raise money for this great cause and we would urge all of you to do the same – it makes you feel great!

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In 2005 I got my walking boots on to raise funds for the research. I decided on China simply because I had seen a presentation about it at another charity event and it struck as something challenging to do. I also managed to persuade my friend Carol to join me. Carol and I paid for our own flights and accommodation so that we could ensure that all the money we raised via sponsorship went straight to OC. We had tremendous support from friends and family, and from women (and their families) who have been affected by OC.

Having broken my kneecap when I was pregnant with Alex, I knew that all those steps were going to really stretch my physical capabilities. What I didn’t take into account was that the steep descents would also test me!! The Wall that you see in the holiday brochures looks relatively simple to traverse (and indeed it is). The rest of the Wall is like a snaking rocky path with watch towers dotted along the way. You have to make the steep ascent (often with sheer drops either side of the path) up the rough steps to arrive at the watch tower and then have to navigate your way down again. I occasionally had to do this on my bottom as it felt the safest way to get down!

Both Carol and I had a fantastic time and were elated when we made that final ascent up the ‘Heavenly Staircase’ (it involved several thousand steps!!). We raised just over £8,000 for OC and my thanks go to everyone who supported us. Your contributions will have helped to make such a difference.

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Many of you will have seen the pictures of new arrival baby Grace Rawlings. Here, her mum, Rachael Rawlings, writes about how they used a very special day to raise funds for OC.

After many happy years together, my partner Christopher and I finally got married in April 2006. We were looking forward to our big day that would include our children, Rebecca and Sam. However, we also wanted to remember our daughter Daisy who was stillborn in February 2003. Somehow it didn’t seem right not to include her in what would be the most long awaited and happiest day of our lives.

We thought of no better way to honour our Daisy than by donating any money given to us by our guests to the OC fund. So, when we sent out the wedding invitations we also included a letter to all our guests telling them what we would like to do. Most of them already knew of our loss and were more than happy to contribute.

We knew that we could not change what happened to us, although we have wished and dreamed it a million times. But we felt that every penny raised would give us a sense of comfort in knowing that it would help the research group to continue their work towards understanding the condition and improving treatment and outcome for all those OC babies.

Chris and I would like to thank all the people at Queen Charlotte's Hospital. Our consultants, Mr Andy McCarthy, Dr Catherine Williamson, Dr Catherine Nelson-Piercy and all the medical team who helped to safely deliver our last two children Sam and Grace. They all gave us the confidence and support we needed and the gratitude we have for them cannot be measured.

Lastly a special thank you to Jenny Chambers with whom we share a common bond. Jenny has become more than a friend to us over the last 4 years; she is a truly remarkable and special lady whom we feel privileged to know.

Rachael, Chris, Rebecca, Sam and Grace Rawlings

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