I’ll admit, I’ve been meaning to write a dedicated blog post about why we are fundraising for Tommy’s for quite some time. So, with a week to go until Ride London – I’ve given myself a kick, and I’m going to give it a bash. Ride London is our biggest event so far, but as a collective team of family and friends for #LeoForTommys we have done a local fete, baked brownies and scones, run a Half Marathon, cycled Bike Oxford, a Colour Obstacle Run, a Virtual Step Challenge and now Ride London. Next year, the sights are set on the new race created by Tommys – the London Landmarks Half Marathon.
I know we’ve talked about it quite a lot, and written a fair bit about what Tommy’s have given us, but we thought it would be helpful to bring it all together – as well as explaining what Tommy’s actually do.
So, Who are Tommy’s?
Tommy’s is a UK charity that fund research into pregnancy complications, as well as supply pregnancy health information to families and healthcare professionals. In fact, they are the largest charity funding research into the causes and prevention of miscarriage, stillbirth and premature birth.
Tommy’s was founded 25 years ago (as a classic broom cupboard project) by two obstetricians working at St Thomas’ Hospital (see what they did there?) in London, who were frustrated by the state of pregnancy loss in the UK. What the organisation has achieved since then has saved many, many lives – you can see a brief history here of the various things that they have achieved in that time and watch this video to discover even more.
The Ethos at Tommy’s
At the heart of Tommy’s ethos is their consistent belief that current pregnancy loss statistics are unacceptable. Given the statistics below, its not hard to understand why Tommy’s have this ethos.
Yet, sadly, this ethos is somewhat rare. The silence and taboo of pregnancy loss in society, together with the complacent approach of some healthcare professionals, means that families can be left further saddened by the whole situation. Our own doctor told us that Leo dying, at 37 weeks pregnant two days after our 36 week scan, was just “one of those things” and that sometimes “babies die”. This gives you little hope for your own future, and also leaves you feeling incredibly bereft about the prospects for other babies. Where was the fight? We needed to know that Leo died, yes, but everyone was doing everything to prevent it happening to anyone else. In those early days of grief – thats what the ethos of Tommy’s gave us. That, put simply, is hope.
Believing that you can actually prevent pregnancy loss is half the battle, and without that belief, healthcare professionals, charities and society as a whole will be limited in their ability to make progress. Yet, to change attitudes, to break the silence and improve outcomes, there is a “desperate need for funding into maternal and fetal research” – and that research is exactly what Tommy’s is doing.
So, what are the statistics?
In 2014, 10 babies were stillborn, each day. 684 babies were miscarried, each day. 152 babies were born preterm, each day.
1 in 4 pregnancies end in miscarriage. 75% of miscarriages happen in the first trimester. 1 in 90 pregnancies is ectopic, which is life threatening and results in miscarriage. Approximately 1 in 100 women experience recurrent miscarriage. The NHS only investigates causes behind miscarriage, after three miscarriages…
Preterm Birth Statistics
Preterm birth happens before 37 weeks in pregnancy, and is the number one cause of newborn deaths and the second leading cause of deaths in under fives. 60,000 babies are born prematurely each year in the UK. Globally, 1 in 10 pregnancies result in preterm birth – and the number is rising.
25% of preterm births are planned due to the mother/baby suffering from serious conditions such as pre-eclampsia or growth restriction. 40% are linked to premature rupture of the membranes – or waters breaking early. 25% are due to an emergency situation, such a placental abruption or infection. 40% occur with no known cause.
Worldwide, approximately 2.6 million babies are stillborn after 24 weeks of pregnancy each year. Half of these could be prevented by better care. Half.
In 2015, Britain sat 24th out of 49 high income countries in terms of stillbirth statistics.
In 2014, 10 babies were stillborn every day in the UK. 1 in every 200 births in the UK ends in a stillbirth. In women with a BMI over 30, the risk doubles to 1 in 100.
Approximately half of stillbirths are related to placental complications. Other causes can include placental abruption, infection, pre-eclampsia, problems with the umbilical chord, obstetric cholestasis, or genetic abnormalities. Around a half of women who experience a stillbirth report a reduction in fetal movements.
So, What are Tommy’s doing to help?
Tommy’s fund four research centres across the UK.
“In 1995 we opened the UK’s first-ever Maternal and Fetal Research Unit at St Thomas’ Hospital in London. Six years later we established a second unit at St Mary’s Hospital in the University of Manchester and in 2008 our third centre was opened at the Royal Infirmary of Edinburgh. In 2016, we opened our latest centre, the Tommy’s National Centre for Miscarriage Research.” – Tommys
All four research centres have established clinics that run alongside to provide expert antenatal care to families at high risk of complications, whilst offering the opportunity to take part in pioneering research. In Eli’s pregnancy, we attended the Research Centre at St Mary’s Hospital in Manchester – you can read more about our own experiences at the Rainbow Clinic here. The Rainbow Clinic, and its team, really are what gave us the belief that another pregnancy might just end in us bringing a baby home. They offer a revolutionary service for families that is sadly far too needed. Yet, their expertise for supporting families following a loss, together with the expert knowledge in placentas, is making an incredibly significant difference in saving babies lives.
The research centres and clinics each focus on a different area of research. You can find out about the variety of clinical trials, studies, and clinics at the various centres on the pages here. We heard about other clinics that St Mary’s run on one of our visits, and it really is incredible to see the difference that they are able to provide families through their combined approach of expert antenatal care and clinical trials and research.
The most recent Unit to open is the National Centre for Miscarriage Research – the first of its kind in the UK, and the largest research centre investigating miscarriage in Europe. It receives national referrals for families who have experienced recurrent loss, as well as recruits participants for a range of studies looking into causes and prevention of miscarriage. The power this research centre has to change the picture of pregnancy loss in this country is phenomenal. If you an interested in their support, click the link above to hear about joining a trial or seeking a referral.
You can watch more about their research here.
Is it just about Research?
Tommy’s work goes wider than research. There are a number of areas that they focus on which have really stood out to us. In particular, the following:
Breaking the Silence & #misCourage
Tommy’s work really hard to break down the taboos and silence that surround pregnancy loss. By doing this they are crucially making people feel less alone, giving their experiences a voice, and helping to raise awareness and understanding for something that affects far too many families.
Their #misCourage campaign and collection of personal blogs does just that. It gives families an opportunity to share their story, whatever it may be, and serves as a platform to demystify all forms of pregnancy loss. The realities of miscarriage are often not talked about, even by medical professionals – so these stories empower women and men to open up about the physical and emotional realities of pregnancy loss. We shared our own #misCourage story here.
The societal norm of waiting until 12 weeks to reveal a pregnancy, ‘just incase’, often means that people feel unable to then share news of a miscarriage as rarely people know that a couple is pregnant. This campaign can really help to change that, and support women and their families through such a devastating loss. The pain of miscarriage is often silenced, but Tommy’s are helping to ensure people are supported and given a voice.
Breaking the silence is not just about miscarriage, Tommy’s really are pushing the boundaries with breaking down taboos over all forms of pregnancy loss, and we couldn’t be more grateful for the platform that they give many families.
Pregnancy Information and Tommy’s Midwives
Tommy’s also provide consistent and reliable advice on pregnancy, giving families safety in finding out information online about various physical and emotional symptoms. I found this such a useful resource in our latest pregnancy, as the world of Dr. Google in pregnancy can be a minefield – and unfortunately can provide false and often dangerous information and advice, especially as different countries provide inconsistent information. They also support healthcare professionals through this service, as well as producing really handy infographics which have been my go-to when needing to check niggly concerns.
Through Tommy’s Midwives, they are able to provide online and over the phone support to women and their families through pregnancy. Tommy’s Midwives are also there for those following a loss, and are trained in being able to support women and their families. I found them a particular support through our pregnancy with Eli, to help discuss our fears and anxieties with true understanding of grief and stillbirth. They are a fantastic sound board to help process the fast running thoughts that anxiety in pregnancy can create.
Their online support on social media also provides various sources of support, through videos on correct methods of turning in bed (that even Serena Williams needs help with!), through to managing anxiety, or how to recognise when to call the midwife and seek extra support.
Most recently, their #AlwaysAsk and #MovementsMatter campaigns relate right back to the core of what Tommy’s are trying to achieve. In response to research, the campaigns help professionals and women feel empowered to address concerns and recognise any change in movements and seek support straight away. These campaigns directly work to reduce stillbirth and other pregnancy complications, and are helping to reduce the myths that often surround pregnancy.
Social Media Engagement
One of the things that stands out to us with Tommys, is their engagement with their supporters and other people online. Tommy’s have a lot of supporters, but they really take care of each and everyone of them to make you feel valued and that your support – no matter how little – is appreciated. Taking part in Ride London has shown us also the level of support that they give their fundraisers, far beyond the standard fundraising pack. It really helps to make you feel part of #TeamTommys and that you are working together to make a difference.
I often see them engage with comments or posts to parents who have experienced a loss, or difficulties in pregnancy, and offering out support via their helpline. It can often feel like you are talking into an echo chamber online with so many people raising concerns, especially in pregnancy, with no one to turn to – but Tommys, and their Midwives, really help people know that there is somewhere to go. I would really recommend following their social media platforms, especially if you are pregnant.
The annual Tommy’s Awards are a fantastic way to celebrate all forms of families and experiences. Our ‘Mums Voice’ nomination this year was so important to us – it helped us to feel that Leo’s story and us sharing it, is worthwhile, important and making an impact. It was truly humbling to hear of other peoples experiences – not just of loss, but of a rocky road through pregnancy or the early days, and to help celebrate these families was truly special and a much cherished memory.
So, what will they do with the money we fundraise?
I appreciate that often it will feel like you are being asked to donate to this or that every day – especially with social media or whip-rounds in the office. It can feel a bit frustrating, especially if you don’t know what the money is being used for – I hope that this blog serves to provide a bit of information about why we have chosen to support Tommy’s.
Tommy’s fundraising helps to ensure that they obtain the UK’s best researchers and scientists working in their four research centres, and the success of their research aids funding from other sources, such as the NHS or Universities.
Some of the people we have been privileged to meet at the Rainbow Clinic include Professor Alexander Heazell or Research Midwife Louise Stephens who really are revolutionising antenatal care and stillbirth research and prevention. Find out more about them both by reading their interviews using the links.
How can you donate?
We are doing a series of fundraising events, along with our friends and family, to raise money for Tommy’s in Leo’s name, most notably Ride London.
If you would like to contribute, we would be so touched and appreciative. You can donate here and help us to achieve our £5,000 goal in Leo’s name.
Thank you for your time, and for your support for Tommys – from our little family.
– J x