Welcome to the winter edition of the newsletter
The Twins Trust BSG exists to support all parents and carers whose twins, triplets or more have died, whether it is during or after pregnancy. We are sorry for your loss and hope that you will find some comfort in the newsletter. If you would like your personal experience, poem or fundraising story to be included in a future edition of the newsletter please get in contact: [email protected].
I hope that you are all doing ok in what can be a really difficult time of year. I have included a section on things that might help along with some photos. Please reach out if you would like some support.
You can see all the ways we can support you on our website but please do email if you want to know anything at all.
Sadly, it has been busy in our group, with lots of new people joining us. So, welcome to our bereavement group if you have joined recently. We have been trying some new online support group meetings which are being well attended. You can find out more about them on the private Facebook group or please email me for more details.
We are now on Instagram and Twitter, as well as our public and private* Facebook groups. Please follow us to hear about all the things we are planning.
*Important please note: To protect the private Facebook group we ask all members to provide an email address to Twins Trust Bereavement Support, purely for security purposes. This includes UK and non UK residents. We must be in receipt of this information before we can accept your request into the Facebook group. This can be done by sending a Facebook request to join the group.
Our 2022 Memorial Meet Up will be in Birmingham for the first time.
You can let us know if you plan to come: https://forms.office.com/r/V3LnyfUTAc
We are still planning the day, so please let us know any ideas that you have for the day. We will be sharing poems, music, personal experiences, lighting candles and hanging butterflies on our memory tree as we have done before but we also have some new ideas for the day.
Twins Trust Bereavement Support Group Questionnaire
We would love for you to share your feedback with us on the bereavement care you received when one or more of your babies died and how you feel about the support we are able to offer through our bereavement support group.
On a final note, I've found fundraising in memory of my twins really helpful. Click here to skip to the latest news about upcoming events as well as our Christmas appeal. We have ideas on our website for how you could help raise funds for the BSG.
~ Sharon
Sharon Darke
Bereavement Support Group Coordinator
[email protected]
A message from Shauna, Twins Trust CEO
I wanted to take this opportunity to introduce myself. I joined Twins Trust as CEO in September, and have been getting to know the organisation and our wonderful community over the past few months. A bit about me: I am originally a human rights lawyer, but I have worked in senior management roles in UK charities and non-profit organisations for more than a decade. I've lived and worked in the UK, US and in several sub-Saharan African countries. I am an experienced campaigner, communicator, fundraiser, and strategist. In my most important role I am mum to three-year old twins. I believe that the support we provide to our bereaved community is one of the most important things we do at Twins Trust, and I want to make sure it remains a priority so that we can continue to help families like yourselves.
~ Shauna
Shauna Leven
Twins Trust CEO
Poems
I Spy
Written by Marianne Andriot, illustrated by Susan Neate. Click here to view the full poem with Susan's artwork.
I Spy in the ice-blue January snow,
With the footprints down below,
Beyond the soft foggy grey
February’s snowdrops come to play
And under March’s kinder sun
Where daffodils begin their fun,
Among the April lambs that skip
And each unfurling leaf and pip
In the sweet pink blossoms of May
With blackbirds hopping on display
And the laughter of a summer rose
Bathing in June’s sun, we doze
Under a honey midsummer moon,
With July’s busy bees that swoon
Over an August lavender haze
And rolling, salty waves
Where September’s sun-blessed berries
See the squirrels making merry,
Among the gold and orange leaves
Of October’s creaking trees
Up in November’s crackling breeze
Soaring with a rocket’s fizzy sneeze,
In December’s twinkling jewel-black sky,
An angel, I did spy.
Memories of our Little One at Christmas
Does Heaven have a Christmas tree
for the little boys and girls
too far away for Santa's sleigh
to reach with treats and toys?
A tree that's hung with moonbeams, stars
and real, shining angel hair
for the precious little children
who all live in heaven's care?
Are you filled with wonder
at its brances, all aglow
with the tears of those who miss you
on this earth, far down below?
For we hope and pray you're playing
with the angels, having fun
but please don't forget we love you
Happy Christmas, Little One.
Personal experience
Maria Kontos – befriender and counsellor
My name is Maria Kontos, and I am a befriender for Twins Trust and a trained counsellor specialising in baby loss and all things related to pregnancy. Here is my story.
On 5th October 2012 my precious identical twin daughters, Lily and Elissa were born at 27 weeks caused by TTTS. After fighting for their lives and being looked after in NICU, Elissa sadly passed away after 8 hours. Then 9 days later on the 14th of October, her sister Lily also lost her fight for survival. They were so beautiful and perfect in every way but just too tiny to survive.
Ever since they had died I wanted to create something positive from this devastating tragedy. The end goal was to help people going through the pain and heartache my family and I had endured. I started by climbing Mt Kilimanjaro just 8 months after the death of my daughters, raising money for Twins Trust. After this I continued to raise money for various charities in their honour.
When hearing about the Twins Trust bereavement group and the befriender service, I knew that this was the kind of support that I had needed at the time. I was very fortunate to have Sharon as my befriender. She was amazing, so lovely and kind, which was much needed at a time where I felt isolated and lonely in my grief. Sharon and the group were a huge comfort, so supportive, and a safe place where my feelings were validated. This inspired me to become a befriender, and although it was heartbreaking to hear from others with a similar experience, it felt good to help someone through the same tragic loss.
During this time I had an amazing counsellor who helped and supported me through my grief as well as everything else in my life. He gave me the tools to be able to move forward, adjusting to live with my grief and life itself in my “new normal”. With the combination of being a befriender and my own personal therapy I was inspired to become a counsellor myself. Helping people like they have helped me has been incredibly rewarding. And since starting my practice I have had the honour of helping many people through tough times and I have seen them come out in a much better place.
I currently have my own private practice where I offer online and in person sessions. I’m also working as a counsellor for Petals baby loss charity. In my practice I work with clients presenting a variety of issues, with a special interest working with both couples and individuals that have experienced baby loss, single and multiple pregnancy loss, stillborn, multiple miscarriages, premature babies and TFMR, supporting them through their loss and trauma. In addition, supporting them with their anxieties around infertility, conceiving again after a loss, during a subsequent pregnancy after loss and any other pregnancy related anxieties. Supporting parents with premature or sick babies in NICU.
Please feel free to contact me at: [email protected]
If you wish to learn more about what I do please visit my website: mariakontoscounselling.com
Christmas
The lead up to Christmas can fill many parents who have experienced baby loss with dread, especially if the death of the twins or triplets is still fairly recent. Sometimes, as with other significant dates through the year, the actual day can be better than anticipated.
I asked our befrienders and Facebook group to share any ideas and traditions of things that they do around the Christmas period that can help with remembering.
Most importantly look after yourself, do what is right for you and your family.
I was reading a fiction book the other day and this quote from it really resonated with me…
Have you ever noticed this really weird thing about life? It goes on, even when life is changed, damaged, diminished.
I found myself feeling this way often to begin with.
Book review
Goodnight Angel Baby
I was sent this book recently by Amy. It is a beautiful story about miscarriage and would be lovely to share with an older child following the loss of one or more of your babies. We have added it to the recommended book list on our website.
Stephanie Ernst from TAPS
Stephanie shares a few words about her amazing charity and about a TAPS diagnosis
Twin Anemia Polycythemia Sequence is a rare complication of twins sharing a placenta. It's often mistakenly called a form of TTTS, even though it has different diagnostic criteria, screening protocols, and long term outcomes. Unfortunately, it is often a missed diagnosis because routine screening protocols do not support looking for it, and it is found either too late, or only when it has begun to do serious harm. TAPS is caused by small connections in the placenta, less than a millimeter thick, and is a long, slow transfer of red blood cells from one twin, to the other, causing anemia and polycythemia. It is characterised by a red and white twin at birth. However, a diagnosis can be difficult to obtain without correct blood testing at birth. Before birth, scans on the mid-cerebral artery (in the brains of the babies) is used to detect anemia.
Even after birth, TAPS can have serious long term consequences, with donors at a high risk of developmental problems and deafness. It is vital that TAPS twins are followed up even after birth, so that things like speech delays and developmental delays can be addressed, and parents get the support they need.
If you have questions about TAPS, or want more information on the follow ups needed, and the types of testing that should be done, you can visit tapssupport.com, or email [email protected].
Fundraising for BSG
We couldn’t have come this far without your support, please help us continue and do even more by supporting our work. You could make a donation or take part in a fundraising event organised by Twins Trust, or set by yourself.
Christmas Appeal – 'Families Helping Families'
At this time of year, many of us need support more than ever. Can you please help us to make a difference to families who are finding the festive season challenging?
‘Families Helping Families’ is our fundraising appeal. At Twins Trust, we know we couldn’t deliver our support and research programmes without you – all the amazing people in our community who support, volunteer and donate, to ensure other families receive the help they need.
Our volunteer befrienders are a great example of this, as they continue to provide a lifeline to bereaved families during the holiday season.
Two of our volunteers, Jeanne and Sarah, have shared their experience of befriending. They each received support from a befriender before deciding to take on the role themselves. They've shared with us how it's changed their lives. You can read their story here:
Jeanne and Sarah's Befriender Journey
We know that times can be challenging. Thank you so much for any donation you can give to our appeal, it is so much appreciated. Every penny donated will ensure we can continue to provide bereavement support and deliver our vital research programmes, and other support services.
We wish you and your family all the best for the holiday season but if you feel you need support, please contact us at [email protected].
Upcoming events
Can you support the BSG?
Take part in one of our charity organised challenges. If you have your own challenge or other fundraising plans in mind, please let me know at [email protected], so we can support you in every way we can.
Here is a short list of events that are coming up. Don’t forget, you don’t have to do it on your own – your friends and families can be part of it too. As we're a small charity, the number of places we have available are limited, so please do contact us or sign up as soon as you can.
Big Steps for Small Feet – Snowdon Trek
3 July 2022
Ascend more than 1,000 metres to reach Wales’ highest peak on a daytime trek. Enjoy breath-taking views and a huge sense of achievement!
Following on from our Ben Nevis climb in 2021, we are proud to hold this joint event again with eight other charities which support families that have experienced the loss of a baby. The loss of a child is something no parent should have to face, and coping with such an unbearable loss is bewildering and traumatic. Twins Trust's Bereavement Support Group helps families cope with the loss of one or more of their multiples. While other charities offer bereavement support, we are the only one in the UK here specifically for multiple birth families.
Many of the walkers will have experienced a bereavement but anyone (aged 14+) is welcome to be part of #TeamTwinsTrust in this fantastic event.
To sign up, visit: https://www.discoveradventure.com/challenges/big-steps-for-small-feet
Twins Trust BSG Annual Community Run
May 2022
Please keep an eye on our events pages and social media for an announcement about our next 5K run. We are really looking forward to it (and perhaps even seeing some of you in person).
RideLondon-Essex
29 May 2022
RideLondon – the world’s greatest festival of cycling – returns on Sunday 29th May 2022, with a new format, exciting new routes.
At the heart of this celebration of all things cycling is the RideLondon-Essex 100 challenge – a unique opportunity to ride 100 miles on traffic-free roads through the heart of London and neighbouring Essex.
10K Walk for TTTS
25 June 2022
Please save the date for our next 10K Walk for TTTS on Saturday 25 June 2022. This year, a virtual 10K walk, run, cycle (or a combination) will sit alongside a live event at Virginia Water in Surrey. More details to come.
Great North Run
11 September 2022
A huge thank you to all our 16 runners who took part in the 2021 Great North Run, to raise a fantastic £6,474 in total. A classic in the running calendar, this half marathon features 57,000 runners, the iconic Tyne bridge and a beachside finish in South Shields.
Royal Parks Half Marathon
9 October 2022
Join #TeamTwinsTrust and book a sought-after space through our charity on this stunning central London Half Marathon. This event sells out every year so don’t miss your chance!
The route features the capital's world-famous landmarks on closed roads, and four of London's eight beautiful Royal Parks – Hyde Park, Green Park, St James's Park and Kensington Gardens.
WOW, HUGE thanks to all our fundraisers, you are truly amazing
A massive thank you to Richard Latimer who took on the Belfast Marathon in October, raising money in memory of his twin boys Robin and Noah. Richard raised an amazing £2,200 for TTTS and Research.
Are you feeling inspired? Have you secured your own place in any other event, or are you planning to? Perhaps you're just thinking about fundraising for the Bereavement Support Group? Please contact me at [email protected] so we can give you as much support as you need.
With very best wishes
Lucie
Lucie Wigley
Events and Community Fundraising Senior Coordinator
Important
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