Credit: Ian Britton @freefoto.com

Miscarriage support and information: a sustainable project for patients and health professionals

We have managed to secure funding from the Department of Health to allow us to explore a new way of getting good care, support and information to people who go through miscarriage, ectopic and molar pregnancy. If it is successful, it will not only improve things for patients, but it will bring in much-needed income for the M.A. It’s a fantastic opportunity for all of us.

The three-year grant will enable us to test out local “packages” of miscarriage support, information and training in a number of English Hospital and Primary Care Trusts (the DH covers England only). The aim is to benefit miscarriage patients directly and indirectly through services designed specifically for each area. These will include:

• direct support and information for women/couples affected by miscarriage, ectopic or molar pregnancy, especially through local support volunteers and leaflet supplies
• in-house training for hospital and community-based health professionals, supporting them in caring for miscarriage patients
• easy-to-access information for patients and health professionals
• development of local volunteers who will be the link people with local hospital and GP/community services. We’ll be seeking and supporting volunteers who can
• offer telephone and/or group support – and/or
• provide the patient viewpoint on relevant local services (e.g. Women’s, Gynaecology or Maternity Services) – and/or
• get involved in planning and reviewing local health services for miscarriage patients – and/or
• help raise funds locally to keep the project going in the long term.

We will recruit a new member of staff in the Autumn to head up the project. If you think you might be interested in receiving the job details when we’re ready to advertise, please contact Liz at the office, preferably by e-mail at elizabeth@miscarriageassociation.org.uk, giving your name and address. It would be very helpful if you put “Project worker post” in the subject title.

A new book for children

In our Autumn 2009 issue we published extracts from Gillian Griffith’s book Goodbye Baby, first published on our website last year. It is a gentle and uplifting story, beautifully illustrated by Lindsay MacLeod, so we are delighted to announce that it has now been published in hardback by St. Andrew Press.

M.A. member Gillian was inspired to write the book some years ago after her own experience of miscarriage. She writes:

“When I had my first miscarriage, my son was almost 3 years old. Old enough to know that we had lost his little brother or sister, but not old enough to understand why.

“As a teacher, I always reach to children's books to explain life events, as children understand things best through relevant stories. I searched our local library and bookshops but the only children's books I could find relating to bereavement were connected to losing a grandparent or pet, not what I was looking for at all. So I wrote my own book based on our story, which did seem to help.

”A few years on (after another miscarriage and the birth of my second son) I decided to offer the story to The Miscarriage Association as I know there are a lot of other children out there who have lost their little brothers or sisters through miscarriage.”

Goodbye Baby has already received many positive comments, from people who found it extremely useful and consoling:

“…such a brave and wonderful thing, it really emphasised the importance of talking about it with the whole family…”

“…a story that is so well written and illustrated, I am sure it will help…”

“I so wish this book had been available when I needed it.”

Our warm congratulations to Gillian, Cameron and Lindsay on this very special achievement. Our thanks too to St. Andrew Press, for donating a proportion of book profits to The M.A. once publishing costs have been met.

Goodbye Baby: Cameron’s Story

Pub: St. Andrew Press, April 2010

ISBN: 978-0-7152-0940-0

£6.99. Hardback – 36pp

Encouraging good practice

GP Trainees

Thanks to Trustee and GP Niki Caplan, we were invited to run a teaching session on miscarriage as part of the training programme for Leeds GP Trainees. With two hours of teaching time, plus a tea break, Niki and Ruth’s double act covered the facts and feelings of pregnancy loss and the implications for GPs, many of whom spend part of their training in hospital. We then divided them into small groups to discuss some case studies, addressing issues such as referral for investigations, requests for early scans and the disposal of pregnancy remains.

They were engaged, enthusiastic and thoughtful throughout and their very positive feedback is very encouraging, both for their future patients and for our plans to follow this up elsewhere. With sessions booked in Harrow and Barnet over the next two months, we are hoping to increase and widen this aspect of our work.

London Marathon

Many congratulations to our team of 29 runners in this year’s London Marathon. After a totally unexpected and most unwelcome downpour at the start, they all set off on their challenge to cover the 26.2 mile course while raising funds and awareness for the Miscarriage Association. You can read some of their stories in the newsletter, but first, please join us in giving three cheers for Team 2010:

Simon A, Rosanna, Jane, Claire, Moya, Dave C, Emma, Laura, Dave F, Rachael, Ben, Carl, Joanne, Simon H, Stephen, Michelle, Tristan, Richard M, Jamie, Marina, Sean, Karen, Gemma, Marc, Mark, Colin, Mark S, Richard S and Emma.

Between them they have already raised over £40,000 for the M.A. and this is not yet including the Gift Aid which we will be able to claim on most of their sponsorship. A truly wonderful achievement.

Karen talks about the journey that led husband Ben to join the M.A.’s Marathon team:

Christmas Eve 2005 was a magical time. I had just discovered I was pregnant and was full of hope and excitement thinking of the New Year ahead. Ben and I had been married for over eighteen months and had talked about a family. However, on this occasion the pregnancy was a “happy mistake”. Our joy was short lived. At nine weeks I began spotting on the Friday evening. On the Saturday I was involved in a car accident as a passenger and on the Sunday I woke up in the middle of the night with bad pain and heavy blood loss. I had what was known as a spontaneous abortion. The very term alone filled me with horror. Surely an abortion is when somebody chooses to terminate their pregnancy? The doctors told me that miscarriage was very common and that it was bad luck. At 36, I was advised to crack on with trying for another baby and reassured as I had fallen pregnant so easily.

We put our baby plans on hold as we were in the middle of selling our flat and moving house, of course, can be extremely stressful. I didn’t even think I would get pregnant during such times; however I miscarried once again at five weeks. To be honest, I told myself that it was bad timing and wasn’t meant to be until we were settled into our new home. I was sad, but dusted myself down and looked forward to getting pregnant again.

I do believe that the best way to get pregnant is to not try, as now we were planning a child, things took a little longer. However, once again I found myself pregnant at Christmas. I felt really good this time and enjoyed the changes to my body. I had a little bump at the twelve week scan and was delighted to get so far. Sadly, this pregnancy was not to be. The sonographer at Epsom Hospital seemed to take a while looking at the screen. Both Ben and I knew that things were not as they should be. I was asked to confirm my dates and was told coldly “there is not a 12 week old baby there”. I was confused and heartbroken and transferred to the A&E department where a doctor gave us our options. I really did not want to go through a natural miscarriage again as I could not face the thought of the physical pain when I was hurting so badly. The earliest date I was given for the ERPC (Evacuation of Retained of Products of Conception), more commonly known as a D&C was a week away. I was scared and nervous and hated the thought that I had a dead baby inside of me. It broke my heart. All I wanted was a little bundle of joy in my arms. I was surrounded by pregnant friends and new babies, why was life being so cruel to me?

I managed to have the surgery earlier via a nurse friend at St Thomas’s Hospital. Emotionally I was on a roller coaster. It seemed such a cold and heartless way for a baby to be extracted from my body. I was extremely ill for about a month after the surgery with severe anaemia. Poor Ben thought I was dying.

After three miscarriages, I was to be tested. I had scans, tests and various procedures at the Recurrent Miscarriage Clinic at Epsom Hospital. It was discovered that I had a thrombophilia. This is a sticky blood condition caused by a genetic disorder. The name of the condition is called Factor 5 Leiden. A simple aspirin a day would correct my blood. I felt relieved but angry and blamed myself for the babies dying. I was given injections to thin my blood once I got pregnant again. I left the clinic expecting to fall pregnant immediately, but this time nothing happened. Further tests revealed no explanation and we and everybody else assumed that our problems were psychological. Because of my age – I was 38 by this point – we were offered IVF. Luckily it worked for us the first time. I commenced the blood thinning injections and was amazed that this pregnancy was progressing. I was classed as a high risk pregnancy, so we were monitored the whole way through and on July 17th 2009 after an extremely long labour, Charlotte Bridget Ellis was born.

During our years of heartache we gained a great deal of support from the Miscarriage Association. The advice and help was wonderful. We were put in touch with other people experiencing baby losses. I got so much out of sharing experiences. I was not alone. There was nowhere else where we could get support for Ben as the man is so often overlooked. It broke my heart that Ben was so strong and amazing throughout our journey, yet he was very much overlooked when the sympathy and advice was dished out.

So, to thank the MA for helping us, Ben gave up his beloved lager, got up from the sofa and trained to raise money for those that helped us by running the London Marathon. The day was amazing. I cried when I turned up at the Miscarriage Association cheering station, as this really marked the end of our journey, although Ben still had another 8 miles or so to run to reach the finish line! He has raised £2,200. I would like to congratulate all of the MA Marathon runners who I understand have raised in excess of £37,000 for this great cause.