Welcome to the autumn 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 reading our newsletter gives you some comfort if you have experienced the death of a twin, triplet or more, or gives you some information about the support we offer, if you support bereaved families.

Please get in contact if you would like to know more about our support or if you would like to be put in touch with a befriender. We have mums, dads and a granny befriender with many different experiences between them. You can request a befriender here.

We are desperately in need of another dad befriender as we only have one at the moment.  Please get in touch if you are interested.

Our Facebook group is a private group and you can request to join here. It offers a safe space for parents to talk to someone who has sadly been through a similar experience. Your posts to the group do not show up in your timeline, so only group members can see them. This is a very supportive community which you may find helpful to be part of.

We have a Twitter account which we update daily that you might also like to follow: @twinstrustbsg.  We also have a new public Facebook page and Instagram account.  You can find details of all of these on our connect with the group page here.

Our booklet has just been updated. It contains information on coping with loss, supporting a bereaved parent, caring for a surviving baby and personal stories. You can find it here. 

We have also updated our factsheets:

• Helping a bereaved parent
• Understanding your loss
• When one or more babies die
• Health Professional Bereavement Support Leaflet

 

You may like to do some fundraising for us. I have found fundraising in my twins' memory a really helpful thing to do. We have some ideas on our website of ways you could help raise a few pounds for our group.

We are also trialling some online support groups.  You can find details about them in our private Facebook group or please message me for more details.

Please get in touch if I can help in any way at all, via [email protected].

~ Sharon

Sharon Darke
Bereavement Support Group Coordinator
 

Poems

 

Baby Loss Awareness Week

Baby Loss Awareness Week takes place every year from the 9^th to the 15^th October. We will be taking part in the week and posting from our Facebook, Twitter and Instagram pages.

On Friday 15^th at 7pm we will be having a Facebook Live event where there will be candle lighting, reading babies names aloud and a poem.  If you would like your babies name read out please email [email protected] with the name/s and how to pronounce their name if it is not obvious.  The live event will take place on our public Facebook page which you can find here.

We are also asking as many people as possible to change their profile pictures on social media to our Twins Trust bereavement group candle photos to help us raise awareness of Baby Loss and our group.  You can find these here.

Thank you for your support - Sharon Darke

Welcome to Baby Loss Awareness Week 2021 - here is more information from the Babyloss Awareness website:

Baby Loss Awareness Week (9-15 Oct) is now in its 19th year.

Baby Loss Awareness Week is a wonderful opportunity to bring us together as a community and give anyone touched by pregnancy and baby loss a safe and supportive space to share their experiences and feel that they are not alone.

This year our theme is Wellbeing and we will be exploring what this means to people from all walks of life who have been affected by pregnancy and baby loss.

We recognise that health workers, who have been under immense pressure during the pandemic, can only look after bereaved families with empathy and kindness if they themselves are supported, and we are here for them too.

Parents and families tell us how important it is that they each find a way to remember their baby in a way that suits them. Some join with others at special services organised by their local hospital or a local support organisation, some find solace in events organised by their faith community while others will remember alone in a way unique to them. It is important to remember there is no right or wrong way and it can change as the years pass too.

During last year’s #WaveOfLight messages of remembrance and hope brought many people together. Take care of yourselves and know that we are here for you now and throughout the year. You are not alone.

Our daily topics for Baby Loss Awareness Week 2021

Each day during Baby Loss Awareness Week 2021 we will be exploring a different topic and we want to hear from you, whatever your experience of loss may be, about how you’ve coped, what helped (and what didn’t) so we can all learn how to better look after each other as a community and know how to get the right kind of support when we need it.

Saturday 9th October

Introduction to the week and the theme of wellbeing

Sunday 10th

Looking after yourself

Monday 11th

Looking after those who provide care and support and those on the frontline

Tuesday 12th

Looking after siblings (children and adults)

Wednesday 13th

Looking after partners

Thursday 14th

Looking after each other as a community (including the workplace)

Friday 15th

Remembering your baby and Wave of Light

 

Personal Stories

Sharon Sarwar

Rayna and Hakeem

August 2020 we fell pregnant and were ecstatic about being first time parents. At 6 weeks, I had a big bleed and thought I was miscarrying but an early ultrasound showed everything was okay and we were expecting twins, we even got to see their flickering heartbeats! We were so elated and felt like the luckiest people in the world! After 16 weeks of battling hyperemesis I finally got to enjoy my first pregnancy. I had an inkling it was a boy and a girl and we imagined our first twin cuddles, bath times, first walks, first school day - they would have been best buddies and will always have a friend in each other. We were looking forward to being twin parents!

 At 20 weeks, we discovered that my cervix was 2cm dilated and twin 1’s membrane was bulging. I remember so vividly it was 3 days before Christmas and had a gender reveal planned on Christmas Day, I didn't expect to stay in the hospital for long. Little did I know that I will be in for 5 weeks and would come home without my babies. The days in the hospital were long and lonely especially during a covid lockdown. I felt isolated and my mental health wasn't doing very well especially being surrounded by other mothers who were waiting for their elective c-section, hearing moms in labour and newborn cries. I didn’t know if our twins would make it to viability.

Our beautiful twins were born a week apart; Rayna at 22+1 weeks through a spontaneous pre-term labour, she lived for 36 minutes but did not utter a cry or open her eyes. She was the most perfect angel, she looked like her daddy and had my eyes and eyebrows. She left the world silently too and had the most peaceful look on her face. Hakeem, her brother didn’t follow until a week later at 23 weeks; due to complications from maternal sepsis he was stillborn and was delivered via emergency C-section as I was critically ill. Our little boy looked so perfect, calm and looked like he wasn’t in any pain, he had his daddy’s eyebrows but looked more like his mummy. If he survived, he would have been a mischievous little boy.

 Apart from losing our precious twins; the week in between their unexpected arrival was the most difficult thing we’ve been through. I wanted to grieve for Rayna’s loss but had to stay strong for Hakeem, it was such a dark place to be. Somehow I felt like Hakeem knew his sister was missing and he just wanted to be with her, I can’t fault him it’s such a natural bond between twins. Albeit losing my precious babies, I find comfort knowing that they’re together creating mischief somewhere and I can rest easy knowing they’re not alone - after all they were meant to be together.

There’s proof that Rayna existed with a death certificate but we didn’t get one for Hakeem as he was stillborn. This aches me so much and I think it will take some time to reach acceptance. Initial days, weeks after their loss were very painful, I didn’t know if I’ll ever get through this dark tunnel and see the light again and the guilt of failing my children.

I got in touch with Twins Trust and were paired with a Befriender; I found so much support within the private BSG group as well. I don’t think anything could have prepared me for this heartache, it’s the worse thing I’ve ever been through - the guilt of not being able to protect your babies and this unrequited maternal love. I seeked comfort with other parents going through a similar situation and knew I wasn’t alone.

 

Months after, I’ve learnt to love my babies in my own way; I visit them weekly and find comfort in their spinning windmills - I feel their presence in little things like appearance of white feathers, butterflies and rainbows. I know they’re watching over me and will be my guardian angels until we’re reunited and oh on that beautiful day my arms and heart will finally be full again.

 

Hannah Gray

Poppy and Rosie’s Story-Poppy (twin A) and Rosie (twin B)

They were diagnosed with stage 2 Twin-to-Twin Transfusion Syndrome at 16+5 weeks pregnant. A day later it had progressed to stage 3, so we chose to have laser ablation surgery.

Within 10 minutes of surgery saw a difference in Twin A, our "stuck twin".

A week later we went for a follow up scan, both baby’s bladders looked good and their fluid levels were improving. But we were introduced to a new word...TAPS, which is Twin Anemia and Polycythemia Sequence.

Three days later we were rescanned as one reading doesn't always mean TAPS, but sadly we found that the girls did have TAPS and it had gotten worse since the Friday.

We chose a second round of laser ablation surgery during which there was a bleed on the placenta, so the surgery had to be stopped. They were very concerned for Twin B after this bleed so monitored me for quite a while by ultrasound.

Very close monitoring the following few weeks showed an improvement in both girls and we went from talking about delivering at 24-25 weeks to possibly getting to 32 weeks! Amazing!

That was until we had a fetal cardiology scan where they found that Twin B, Rosie had quite a significant heart problem. It wasn't squeezing enough and there was back flow of blood. They said if she made it to the weekend, she would be lucky.

The following week we went back for another cardio scan and even we could see that our poor Rosie’s heart was even worse. It was beating slower than it should and the back flow was worse. 

Rosie sadly passed away on 30th April 2021 at 16:10 at 23+6 gestation and one day before 'viability'.

After Rosie passed, our surviving daughter Poppy was monitored closely, and she came on leaps and bounds! 

At 27+2, my waters for Rosie ruptured and I was admitted to hospital for even closer monitoring.

On 25th May at 27+3, Poppy made her appearance at 11:25pm, followed by Rosie at 11:26pm.

Poppy was in neonatal care for 66 days and is now home, doing very well.

Memorial Meet Up - Save the date!

Message from Phil Doran who attended the first Memorial Meet Up in London with his family:

Dear all,

You will see that a memorial meeting has been arranged for Sunday, 12th June 2022.

Birmingham was chosen to give as many people from across the UK as possible the opportunity to attend - with the venue just a short walk from Birmingham New Street train station.

Please note, this is not a religious event. This is a meeting for parents, families and friends to get together and meet other people who have experienced the loss you have.

There will be some talks from people who will share their experiences, there will also be people there who can offer guidance and support - but more importantly, comfort, love and understanding.

Further details will be released closer to the time with a fuller agenda.

However, for now, we would like an indication of how many people may attend. To that end, can you let us know if this is something you may come along to?

Many thanks. On behalf of the

Bereavement Support Group

If you wish to attend please let us know on this form https://forms.office.com/r/V3LnyfUTAc Numbers are limited.
 

Fundraising

Sharon Darke - London Fundraising

As I write this I am 12 days away from my second London Marathon. I feel very lucky to have got both places through the ballot in 2019 and again this year. I am raising funds for our bereavement group again and have already hit my target. 

I have been cautiously training as I am just recovering from an injury. I did manage to do my final long run though of 22 miles along the canal for Charlie and Joshua’s 22nd birthday. It was tough but special. 

I am excited but apprehensive about the day, even though I have ran the distance before it seems such a long way! I have had a vest made with our logo on and am currently adding babies names to it from our bereavement group. I am quite sure that thinking of them all will get me around on the day. 

 

I am excited but apprehensive about the day, even though I have ran the distance before it seems such a long way! I have had a vest made with our logo on and am currently adding babies names to it from our bereavement group. I am quite sure that thinking of them all will get me around on the day. 

Thanks for all of your kind donations, words of encouragement and most all, allowing me to wear your babies names on my top. I will update you on the other side!

https://www.justgiving.com/fundraising/sharon-darke6

Since the last newsletter I also ran the London ASICS 10k, which was my first big event since COVID. It was a great route and a lovely run through the centre of London. I wore my bereavement group T-shirt and had a few acknowledgments along the way. 

 

If you are interested in running any events for our bereavement group please get in touch or have a look on our website for a few ideas. We do plan to do another BSG community run next year and will update you when we have more details. 

 

Philippa Padlock

Hello all, as I write I feel sad that I have not shared this sooner with you  Yesterday I ran the Great North Run for Twins Trust, specifically to raise awareness for the Bereavement Group. I was happy to meet 4 other runners also running for them, sadly for me though they all had healthy twins and I felt a real pang of envy/resentment/sadness as I started my race.

Undeterred, I tried to channel my emotion into giving the race my all. Spurred on by my beautiful boys, it was the ultimate race of my life thus far! Very chuffed on a personal level, smashing sub 2 hours, but also having conversations with colleagues who perhaps weren’t aware of my true family. And feeling more at ease talking about my boys and sharing my story. I have surpassed my original total of £1,000 but I have increased as my colleagues and running club mates are still donating.

I want you all to know - whether I know many of you or not and all of your children’s names - that every single one of you in this group was in my head and heart whilst running. Running for all our children that never will be able to and raising awareness of the very sad side to Twins Trust, but invaluable support they offer to us as bereaved families xx

 

Sam Rumens

Going on a Bear Hunt for Jacob and George  

On the 2^nd October it would have been my first son Jacob’s 10^th birthday. Four days later it should have been his twin George’s. Sadly they were not able to stay with us after being born at 24 weeks. Jacob lived briefly and kicked his arms and legs around but was too small for the doctors to intervene. George was much bigger and we hoped he might have a different outcome but after a difficult delivery he was devastatingly stillborn.

 

In some ways it seems a long time ago, in other ways it seems only yesterday. I’ve come a long way and have been blessed to have two more daughters. I often wonder how they would have been different and how they are the same. My oldest daughter is studious and quite shy. I think she might be more like George as he was always the less active in my tummy. My youngest is into football, climbing and is very social. Jacob was always kicking me and moving around so perhaps he would he would have been a footballer too. 

The girls know all about their big brothers and talk about them all the time. Their ashes are scattered at a beautiful carving of bears in Chislehurst and we walk past them most days. On Jacob’s 10^th birthday we are going to raise money for the Twins Trust Bereavement Support Group by doing a sponsored walk to find all the bears in the area. There are 30 to find! We will end at the boy’s bears. If you’d like to read more the link is here:

https://www.justgiving.com/fundraising/samantha-rumens

We did it! And raised over £1000! I can’t believe it!

Thanks to all of our fundraisers from Rachelle - Head of Fundraising

Summer is always a busy time of year for events, and our BSG fundraisers have made a big contribution – as always – towards supporting our charity through their efforts. We’re in awe of each and every one!

Our second annual Walk 10K for TTTS has raised a wonderful £32,000 (inc. Gift Aid). We are so grateful to everyone for helping us to smash our target of £17,000. BSG participants included Lauren Bond, who ran with husband Tim to raise an amazing £3,226 (inc. Gift Aid) in memory of their twin sons Noah and Bohdi, who they lost to TTTS at 32 weeks in June this year. Jamie Young and Catriona Amberton doubled their challenge distance to walk 20K and raise £3989 (inc. Gift Aid), a year on from TTTS taking their identical twin boys Thacker and Thomas without warning. Clare Wood and family raised £652 (inc. Gift Aid), remembering her Robert, who lived for five days after being affected by selective growth restriction, one of the conditions being researched at the Twins Trust Centre – his twin Thomas was no doubt cheering his mum on.

Take a look at our Wall of Heroes who took part and raised £100 or more – and don’t forget you can send your own lovely photos to be included to [email protected].

Another 10K fundraiser – but this time taking part in the York 10K run on 1 August – was Nick Ollis, who ran in memory of his twin girls Lydia and Evie Ollis. Supported by his running partner Mike Barnie, Nick has raised £2,053 towards TTTS and other research; what an achievement!

Overcoming the Tough Mudder challenge in early September was Bryan Perkins, who raised a brilliant £527. He ran in memory of his nephews Charlie Bear, Frankie Bear and Little Bear.

 

Our fabulous team of 16 Great North Runners has raised £4,378 in total from the race on 12 September, with funds still coming in. Philippa Paddock raised a fantastic £1,390 (inc. Gift Aid) in memory of her sons William and Max, who would have started school this year. Phillipa is supporting both the BSG and the Twins Trust Centre through her fundraising – thank you, Phillipa! Ed Brown and Jill Willougby ran in memory of their identical twin boys, who died from TTTS at 23 weeks, raising £407 towards research programmes. What an important difference this will make.

And of course, a big challenge as Autumn arrives is the London Marathon on 3 October. Jamie Bruce will be taking part, spurred on by the incredible £3,590 (inc. Gift Aid) he has already raised, and the bereavement support two families he knows have recently received from Twins Trust. Jamie will be running in memory of James Cunningham, and Isabel and Dylan Summers. 

We are so lucky to have all these wonderful people above – and many more – helping our charity to continue to support families at all stages of their parenting journey. We always want to continue doing even more towards saving babies lives, and remembering little lives lost too soon. Could you help us with this vital work? We have lots of exciting events planned for this year and next, so please visit https://twinstrust.org/bereavement/get-involved/fundraising.html to see all the fun you could have taking part.

If you have your own challenge or other fundraising plans in mind, please let [email protected] know, so we can support you in every way we can.

Trusts Volunteer

Can you help us to boost our important Trusts and Grants income? We need a volunteer with strong research skills to help us maximise our funding opportunities. You can volunteer remotely or in the office. Some research can be done online out of hours. Please contact Rachelle Barnett, Head of Fundraising on [email protected]