DECEMBER 2023 NEWSLETTER The newsletter for bereaved parents and their families
arc-uk.org Helpline 020 7713 7486
WE’RE HERE...
We’re here for you, your partner and family if you... ... are making decisions before, during or after antenatal tests ... have been given a worrying result from an antenatal screening or diagnostic test ... have been told your baby has a fetal anomaly ... have to make a difficult decision about continuing or ending your pregnancy ... have made a decision following antenatal testing and would like ongoing support
Want to talk? Call our helpline on 020 7713 7486 2
How ARC can support you National helpline ARC News ARC forum Publications for parents and family National support network Parent meetings
DEAR FRIENDS Welcome to our last newsletter for 2023. As we approach the Christmas holidays, we know many ARC parents will be struggling to feel festive. It is traditionally a family time, so it’s natural that thoughts turn to those who are sadly missing. You don’t have to be alone – our helpline will be covered throughout the holidays. We celebrated our 35th anniversary earlier this year and are so grateful for the sustained support of our valued donors, thank you. However, we always need financial support to ensure that all parents can access our different types of support, especially those feeling isolated in their experiences. As a result, this year we are focussing our Christmas appeal on running more face-to-face bereaved parent meetings in 2024. Since their post-pandemic relaunch, these have proven invaluable to parents wanting to connect with other bereaved families. Feedback tells us that the opportunity to share experiences, coping strategies and hopes for the future in person is deeply impactful, so with your support, we would like to raise £5000 to deliver five meetings across the UK. Why not make ARC your chosen charity this Christmas? More information about how you can donate to this appeal can be found on page 12. Since our last newsletter, ARC staff have continued to run our parent and professional services brilliantly. I was pleased to attend our annual Information and Support Day for parents in November. It was a chance for parents to meet our staff and trustees and I’d like to thank our guest speakers Dr Jasmin Tay and Mando Meleagrou, as we know parents valued their talks. We also ran our annual conference for professionals online this autumn, on the theme of Learning from Each Other – A Four Country View. I was thrilled that this was attended by 189 professionals across the UK, who fed back that: “The whole day was inspiring and educational. It has made me reflect on my role and where the value is.” As always, our staff have worked tirelessly this year so I would like to thank Jane, Sally, Rebecca, Hannah C, Hannah M, Karen, Suzie, Miranda, Jenny, Vic, Katy and Barbara for all the work they do. I hope this holiday season can bring you some joy. The Board of Trustees all join me in wishing you a wonderful holiday season and a happy, healthy and peaceful New Year. Kate
3
TEAM NEWS I
t’s been a packed few months for the ARC
We hosted our annual Information and Support
team! Here is a little of what we have been
Day for ARC members on 4 November. Rebecca
up to:
helped organise the day and, most importantly, ensured that there were enough sandwiches to
We were pleased to run our first-ever online
go around! Rebecca has also been busy working
conference for healthcare professionals in
with Katy on our Christmas Appeal, which you
September. 189 professionals joined from
can find on page 12, and getting your Christmas
all over the UK to hear from a selection of
card orders out to you. There is still time to order
handpicked industry experts. Jane, who
some; visit www.arc-uk.org/support-us/shop/.
chaired the event, was pleased to see the conference ran smoothly and that so many
Hannah and Jenny continue to provide
healthcare professionals could attend.
training to healthcare professionals, both in-person and online, across England and
In other news, we are delighted to announce
Wales (whilst Miranda is on maternity leave).
that Jane has been awarded an Honorary
Our in-person London training days have
Fellowship from the Royal College of Obs and
been really popular, and our 2024 dates are
Gynae for her dedication and achievement in
already filling up. We have recently started
the development of women’s healthcare. Whilst
incorporating filmed interviews with bereaved
Jane does not like to make a fuss, we wanted to
parents into our training to represent the
share this fantastic, well-deserved news with
parent perspective better so healthcare
you all.
professionals can best support expectant and bereaved parents.
Sally has recently held bereaved parent meetings in Cardiff, Newcastle and
Karen continues doing an excellent job
Nottingham. We always get great feedback
representing ARC in Scotland. In October, the
from these meetings and hope to hold even
Scottish Government announced the launch
more in 2024. Follow us on Instagram (@
of the Pre-24 Week Certificate and Memorial
arcantenatal) to be the first to hear about
Book of Pregnancy and Baby Loss. ARC was
future events. She continues to look after our
involved in the development of the book,
support network of volunteers. If you are
which will provide support to some parents in
some time on from your own loss and you
Scotland who have lost their baby prior to 24
think you have the capacity to offer support
weeks. She also represented ARC at the Scottish
to people who are more recently bereaved,
Government Miscarriage Event in November,
don’t hesitate to get in touch
and has been delivering lectures to student
(sally@arc-uk.org).
midwives across the country.
4
Suzie held a Remembrance Service in Northern
Katy is helping organise our events and is
Ireland during Baby Loss Awareness Week,
always keen to attract new donors. She’s
which received positive feedback and gave
particularly promoting our workplace giving
bereaved parents a chance to remember
and CSR options – did you know that lots of
their babies. You can read more about it on
organisations match-fund charitable donations?
page 13. She has been supporting healthcare
– and ARC’s support offer for families in
professionals as well as parents, organising
the workplace, which helps employees and
three ‘Wellbeing in the Water’ events for
managers navigate returning to work after a
staff involved in caring for families through
bereavement and HR policies. You can read
a prenatal diagnosis or bereavement care
more about these opportunities below, or email
following a diagnosis.
Katy – katy@arc-uk.org – to find out more.
Workplace giving and support
screening and coping with its consequences
There are many ways in which, as an employee,
are supported holistically at work. Jane is
you can help ARC make a huge difference.
experienced in advising organisations of all
Workplace giving and partnerships help team-
sizes, with an emphasis on pregnancy loss and
building, boost staff morale, and with ARC’s
bereavement support.
expertise in policy guidance and training, can directly impact your organisation’s CSR
Offer employees ARC’s ‘Handling Difficult
objectives and communication styles.
Conversations’ workshops, in person or online: Jane has twenty years’ experience
There’s fundraising, nominating us for a
in training professionals to communicate
Charity of the Year partnership, or giving to ARC
effectively in emotionally charged situations.
monthly via a Payroll giving scheme (whereby
This reputed workshop equips staff to handle
your organisation often matches the donation).
challenging interactions with their colleagues
We are also keen to promote our corporate offer
and stakeholders. It is suitable for a variety of
to businesses that would like to sponsor our
work settings and would be tailored to your
work in return for mutually beneficial outcomes
workplace: from managers tasked with giving
and acknowledgement. Your workplace could:
what may be seen as negative feedback or difficult news to staff, to call centre or helpdesk
Sponsor one of our 2022-2025 aims:
workers faced with aggressive or distressed
enhancing our vital helpline; reaching more
contacts, or more specifically, employees
hospitals across the UK to deliver ‘Sensitive
wanting to use the right language and approach
Communications’ training to midwives,
with peers affected by sensitive issues like
doctors and sonographers; publishing new
pregnancy loss.
literature in different languages or to LGBTQI+ or younger parents.
We’d love to hear from you if any of these partnership opportunities strike a
Hire our Director, Jane, to enhance
chord! Please email our Fundraising
workplace family support policies: to ensure
Development Officer, Katy (katy@
that all parents struggling during antenatal
arc-uk.org).
5
Ol vi i a W
e terminated our very wanted and loved daughter Olivia in November 2022 at 13+6 weeks, who had Trisomy 21 (T21, Down’s syndrome). I’m sharing her story to honour her, and to help others by raising awareness and making people feel less alone.
Early Pregnancy It was our first pregnancy after going through IVF due to my diminished ovarian reserve and unexplained infertility. I tested positive 6 days after our 3rd embryo transfer in September, and was in disbelief as I’d been bleeding; I was excited, but thought it may be a chemical pregnancy. I had lots of one-sided pains so to rule out an ectopic, we had an early first scan at 6+1 weeks, on our wedding anniversary. I had a panic attack during the scan… Looking back, I think it was mother’s intuition that something wasn’t right. Early pregnancy was difficult with bleeding, pain, anxiety, and nausea to the point I lost weight; I felt miserable and needed support from the perinatal mental health team. I had several more scans and at 9 weeks, when I had another bleed and thought I must be miscarrying, we found I had a subchorionic haematoma (SCH).
Olivia’s story By Becky
At 10 weeks we went for a private NIPT (non-invasive prenatal test, a blood test which looks at DNA to screen for common chromosome issues) and scan. I was no longer bleeding and we were so happy to see our baby waving and kicking. The sonographer thought everything looked good and said we should expect our test results to be fine, so I felt more hope and positivity, and bought a few things for the baby. 6
Bad News On 4th November, at 11+1 weeks, I was shopping for prams when my phone rang. I knew they only called if it was bad news. I was told that our baby had a greater than 95% chance of Trisomy 21. I was in shock, devastated, and burst into tears. She explained that this result was fairly certain, but recommended booking an invasive test. I found out that we were expecting the little girl I’d always wanted. My world fell apart, and it felt surreal that everything else continued around me. I called my husband to break the news as he was abroad with work. I booked a CVS (Chorionic Villus Sampling) test a few days later with Fetal Medicine, who said they had never seen the NIPT give a false positive for T21. They advised that the local hospital only offers medical termination (induced labour) and said I would have to call BPAS – an abortion clinic – if I wanted surgical termination. I was shocked. I let out a primal howl on the drive home. Once home, I scoured the internet and had calls with ARC and BPAS. ARC were incredibly helpful, giving me information about T21 and talking me through my options. I started grieving that day.
Research, Testing and Decisions My husband got home the next day, and we talked and cried. We discussed the research I’d done. We knew about the learning disabilities but learnt a great deal about T21 that we hadn’t previously known: the prevalence of heart defects, childhood leukaemia, susceptibility to infections like pneumonia, epilepsy, gastrointestinal issues, hearing and sight problems, neck instability, premature ageing and early dementia, and average lifespan of 60 years. We looked at how every developmental stage is usually delayed, and found that often the adults have a mental age of around 8 years old and frequently need to live in assisted living. We read stories by parents of people with T21, about young children who have had recurrent cancer, ones who cannot be independent in their twenties, and those who were stillborn or died very young – even babies whilst awaiting heart surgery. Even after heart surgery there could be ongoing complications. There is a certain difficulty that comes with a grey diagnosis like T21, because it is a spectrum, and you never know how badly your child will be affected. We could not assume that she’d be healthier and higher functioning. She may never have been able to speak, feed herself or go to the bathroom by herself. I was worried she would be bullied, and never have a family or career. We are not young and hated the thought of her being in a care home when we are gone. There was also a high chance of miscarriage or stillbirth, especially as I had already been bleeding; according to the Down’s Syndrome Association, the rate of miscarriage or stillbirth in T21 between 12 weeks and 40 weeks is about 30%, and I was at increased risk due to the SCH. I read that the babies with heart defects are 5 times more likely to die in the first year. I then had a heavier bleed and again thought I was miscarrying. A&E wouldn’t scan me. My husband then tested positive for Covid, so he isolated in our spare 7
Olivia’s story continued room; I thankfully didn’t catch it. I did not mention my husband’s Covid to the hospital as I was afraid they wouldn’t see me if they knew; I had to say he was busy with work. The Fetal Medicine scan at 11+5 weeks showed some soft markers of Down’s syndrome: a small nasal bone, 2 heart defects which may require surgery after birth, and an absent a-wave of the ductus venosus (a problem with the shunt which carries oxygenated blood to the baby’s heart, which is associated with heart defects and adverse outcomes for the baby). I wasn’t expecting them to play the sound of her heartbeat whilst scanning; I was upset that my husband wasn’t with me for that, but it was transfixing and amazing to hear. I saw her swallowing the amniotic fluid as she was starting to practise breathing. After the scan, the consultant said she wouldn’t do the CVS test due to my bleeding as it increases the chance of miscarriage… I couldn’t believe it. She also said the CVS would be painful. She advised me to wait for an amniocentesis at 15 weeks, and advised against surgical termination, saying it could harm my uterus or cervix and further impact my fertility. I went home stunned, thinking I’d be waiting weeks for an answer then going through induced labour at 16 weeks. I would have been on a labour ward, in a separate bereavement suite, but too close to the sounds and sight of newborn living babies. They said I wouldn’t be allowed an epidural, but I knew that with my chronic pain I would need one. I was scared to go through the pain and trauma of delivering a dead baby, and scared to see her. I had also read that some babies are born alive in that situation and didn’t want to watch her die.
My husband and I had to make our decision through a closed door as he was still in isolation; this was awful.
They had said that we could terminate without further testing if we wanted, as they were so sure of the diagnosis already, and my husband said we should do that because he didn’t want me to go through the pain of an invasive test, but I needed a definite answer. I couldn’t bear seeing my bump grow and was afraid to reach the point of feeling her kick. I told Fetal Medicine the next day that I couldn’t wait for an amnio, and the lead FM consultant agreed to do the CVS the following morning, on 10th November, when I was 12 weeks. I was grateful that she understood we needed an answer. The CVS took a while as she took two samples to ensure a conclusive result, and I was in pain afterwards for a few days. We learned that 90% of people who receive a prenatal diagnosis of T21 terminate. This consultant said surgical termination would be fine, which was a relief (I had spoken to ARC after the first appointment and they had encouraged me to ask again). We received the initial CVS result 6 days later, on 16th November, confirming that our baby had T21. This was confirmed again the following week via a karyotype test result. My husband and I had to make our decision through a closed door as he was still in isolation; this was awful. After a lot of research and turmoil, we decided to spare our 8
daughter from the suffering and difficulties she would have faced, and to give her peace. It was very tough making this decision after 3 years trying to conceive and doing IVF. I was worried that we would never have another baby, but tried not to focus on that and only what was best for our daughter; we personally felt it would have been selfish to keep her and watch her struggle through life. Termination for Medical Reasons (TFMR) was the hardest decision, but we made it out of love, and took on a lifetime of pain and heartbreak so our baby didn’t have to suffer. We did not know how affected she would be, but were not willing to gamble with her wellbeing and knew that she would not have the quality of life she deserved. Many doctors and psychologists said we were doing the kindest thing. We then named our daughter Olivia Hazel. The 3 weeks of limbo and anticipatory grief between the NIPT result and the termination were incredibly difficult. I was constantly on the phone making arrangements. I felt it was not right for me to go to BPAS for my own medical reasons, so they made a referral to an NHS hospital in London for the surgery. I arranged for a funeral director to collect Olivia from the hospital. I felt an extra weight and level of guilt, as I was the only one who these people wanted to talk to and sign forms; it was all down to me. I had decision fatigue and still do. I spent those weeks wishing I would miscarry so that the decision and responsibility would be taken out of my hands. In the days leading up to the termination, once everything was arranged, I rested my phone on my tummy and played Olivia the special songs we’d chosen for her funeral. We took her for nice walks, went out for tea and cake and gave her a lovely last meal. I let myself take my first warm bath of the pregnancy.
The Procedures The termination began with a preassessment, where the consultant explained the D&E procedure. I begged her to scan me again so that if Olivia had passed away after the CVS, I would know that it wasn’t me who had taken her life. She was still alive. The following day, I had to take a pill at home; I waited until the last minute and took it whilst holding hands with my husband and crying together, telling Olivia how much we loved her. I did not want to let her go, but knew it was for the best. The surgery day, 2 days later on 23rd November, was extremely hard. I woke up and I was bleeding again, which can be a side effect of the medication. I was terrified that I was going to miscarry before we got to hospital. My husband was not allowed to be with me in the gynae unit, so I felt very alone. I was given two more pills on arrival. I was in pieces in the anaesthetic room, wailing and apologising to Olivia, and cried in recovery when I woke up and my baby had gone from inside me but was told to be quieter. I had no privacy as I was in a room full of other women. I had extreme pain in the week after surgery, to the extent of screaming. After an emergency scan, I found out that I had 2cm of retained placenta and also endometriosis. They later said the tissue had passed. However, 7 weeks post-surgery 9
Olivia’s story continued during a private scan, I found out that it was still there. I had a holiday booked a couple of days later; the surgeon said I could go, and booked me in for surgery on my return. I pushed for a hysteroscopy as I wanted them to visualise and ensure they left nothing behind. The placenta hadn’t passed on holiday despite heavy bleeding, so I had hysteroscopic removal 9 weeks after the termination. Returning to the place where my baby was taken from me was so hard. I asked to have the pre-medication in pessary form, as I would have found it too traumatic to take any tablets again. I had very heavy bleeding when I got home, then ongoing pain afterwards and was treated with antibiotics for a suspected pelvic infection. I think the services for TFMR in the UK need to change: there should be a clear and sensitive NHS pathway where the mother should have the choice of whether to have surgery or labour at her local hospital, and if opting for surgery, the partner should be allowed to be present in the waiting time before and after surgery. There should also be better aftercare (my perinatal mental health support ceased afterwards but would have continued if she’d been born, and I wasn’t allocated a bereavement midwife as I was under 20 weeks).
It was a beautiful snowy day and the grounds of the crematorium looked like Narnia as we were driven up to it...
The Aftermath
We cremated our darling baby girl Olivia on 14th December, just the two of us and a celebrant with a few special songs and readings, and flowers. It was a beautiful snowy day and the grounds of the crematorium looked like Narnia as we were driven up to it; this seemed fitting as one of the songs we had chosen was ‘Winter Bear’. My husband carried her coffin inside. It was very sad but I’m glad we gave her the goodbye she deserved. We collected her ashes the following week and took her for a walk in one of our favourite places, where we used to walk when I was pregnant. Her ashes now sit in our living room, surrounded by keepsakes including beautiful resin shapes containing her funeral flowers, and a jar of soft white feathers which I’ve collected. We announced that we had lost Olivia as we wanted people to know that she existed. We said we had a TFMR as I didn’t want to pretend it was a miscarriage, but we only told some people the T21 diagnosis as it felt so stigmatised – a taboo within a taboo within a taboo. Most were supportive but some made their disapproval painfully clear. Some friends and family didn’t check in at all; others did and then disappeared. The loneliness and isolation have been overwhelming at times. I’ve been grateful for the support of some lovely people, though. In the early aftermath, I had many days where I wanted to die and be with Olivia. I’ve had to work through my trauma, intrusive thoughts and regrets about not delivering 10
and holding her…and remind myself of the reasons why I opted for surgery, and be kind to myself. I found some peace around the surgery regret when my pain consultant later told me that when I was anaesthetised, Olivia would have been too. I couldn’t look at any babies for many months and would cry if I saw one in the supermarket. I cried when I thought about drinking alcohol at Christmas as I should not have been able to. I struggle when I see people with Down’s Syndrome. I’ve spent days and nights reading stories, statistics and scientific papers even months later to feel more at peace with our decision. I still feel guilt and immense sadness, but I know that we made a loving choice. I found it invaluable reading and listening to podcasts about TFMR, and joining support groups to talk about it in safe spaces. We had some counselling sessions through a charity (Petals) and I have had EMDR for my PTSD. I found that there were not many public stories about TFMR for T21, so I hope that this story is helpful to some people looking in future. I felt that it would have been an easier process if we had a diagnosis which was incompatible with life. I found it very hard coming to terms with a grey diagnosis involving so many unknowns, and it was hard facing hurtful comments and judgement from some people who disagreed with terminating for T21. It is nobody’s place to advise what a couple should and shouldn’t do regarding their pregnancy, and I have learnt that nobody can really say how they would act until they are in the situation themselves: I never thought I would terminate for Down’s syndrome, but then I did. I believe many of those people are not aware of the extent of the medical conditions faced by that community – just as we were not until we did the research. Not to mention the learning disabilities. Many people just think of those with T21 who are the smiley babies or high functioning adults. You don’t see the ones who died young or cannot leave the house. Some people also wrongly believe that people who go through TFMR do not want or love their baby (I’ve read many comments where people say they “would love the baby regardless”) – this is so wrong. We loved and wanted our baby, and decided to end her life so she would not suffer and would only know love and peace. She felt no pain. It has been devastating and traumatising, and the hardest decision we will ever make, but this was the biggest act of love we could perform for Olivia. At least 5000 TFMRs take place in the UK each year. It is 3 times as common as stillbirth and neonatal death combined. Yet very few people talk about it. I don’t want our daughter’s story to be a dirty secret. I read a great quote by Brené Brown: “Shame cannot survive being spoken. It cannot tolerate having words wrapped around it. What it craves is secrecy, silence, and judgment. If you stay quiet, you stay in a lot of self-judgment.” 11
ARC CHRISTMAS APPEAL T
his year ARC celebrated its 35th anniversary! We are so grateful that, thanks to our generous donors, we have been able to provide much-needed support to parents facing heart-breaking decisions about the future of their pregnancy for over three decades. However, we are always seeking financial support as we want to grow our services to include all parents across the UK seeking help, especially those feeling isolated in their experiences. As a result, this year we are focussing our Christmas appeal on our face-to-face bereaved parent meetings. Since their relaunch after the pandemic, these have proven invaluable to parents wanting to connect with other bereaved families who have also been through a termination of pregnancy after a prenatal diagnosis. This opportunity to share experiences, coping strategies and hopes for the future is deeply impactful for parents: “I’ve really struggled with so much guilt, grief and ‘what if’s’ over the past couple of years and have felt very isolated and lonely… Hearing the stories from other parents was absolutely heart breaking, but there was a true compassion and understanding from each and every person in that room… What I wasn’t expecting was to come away from the meeting feeling positive, that it was okay to think about my baby and acknowledge that I had a son.” Parent at our Sheffield meeting “Meeting face-to-face, rather than on the forum or by phone, was especially helpful. I’ve never actually met anyone in person before who’s been through a termination after finding out there was potentially something wrong with their baby. There was such compassion and understanding in that room. I could identify with so much of what others said and felt.” Parent at our Bristol meeting We know that Christmas can be a time of mixed emotions as it is a family-oriented time, which can heighten the sense of loss and sadness for bereaved parents. We would therefore love to centre this appeal around the opportunity to hold more meetings in 2024. The cost of one parent meeting (venue hire and coordinator time) is approximately £1,000 so we would be delighted if we could raise £5,000 to deliver five parents meetings next year. With this increased support, we’d aim to hold meetings in locations across the UK. To help support this goal, why not make ARC your chosen charity this Christmas and donate towards our £5,000 appeal. It is very easy to donate online at https://arc-uk.enthuse.com/cf/arc-christmasappeal-2023, or by calling 020 7713 7356. You can also buy our lovely ARC Christmas cards on our website: https://www.arc-uk.org/support-us/shop/ Thank you and all good wishes for Christmas and the New Year from the ARC Team.
12
REMEMBRANCE NORTHERN SERVICE IRELAND A
RC hosted a Remembrance Service in Northern Ireland for parents during Baby Loss Awareness Week 2023. It was a secular service and included poems, readings and music, with both parents and healthcare professionals taking part. Parents’ feedback was really positive, and we were honoured to provide a space to bring parents together to individually and collectively honour and remember their babies. Below is one of the readings, entitled A Lifetime of Love. This was written by Suzie, ARC NI Co-ordinator based on her PhD research into parents’ healthcare experiences of TOPFA/TFMR In Ireland and Northern Ireland. All the words are direct quotes from parent interviews. A Lifetime of Love
There’s something wrong with your baby.
We can never do the midwives justice with our words.
It was like a bomb exploding in my head, in my heart.
They cared for us compassionately as parents losing a baby.
I was still alive and I could feel the pain.
They helped us make memories which we will
A feeling of drowning, being adrift, suspended in time.
treasure forever.
This was happening to someone else, not to me.
Just being able to hold her was all we could ask for.
I could hear someone screaming – it was me.
To know that she was real. That she existed. We were so filled with love for our beautiful baby girl.
We were in denial, hoping and praying our baby would be fine.
Losing our baby has changed us and the way we
We thought we had run every scenario through
look at things.
our minds but We never once imagined what we were told.
All those things we used to think were so important.
We were shocked. We couldn’t take it in.
But when the worst thing happens to you, you think differently.
And when they finally made it clear to us our
Our lives have changed. We have changed.
hearts shattered.
It has changed our relationships with others.
We were devastated. We were scared.
We will never be the same people we were But we’re learning to live with the people we are now.
I can still feel the pain and the darkness. The feeling of drowning and anger,
We are a family, but not as we should have been.
Being told you have a choice, when there isn’t
Losing our baby could have been the reason we
really a choice.
stopped living.
Just Sophie’s choice. No good outcome whatever
But having her and losing her is the reason we still
you chose.
get up in the morning.
You don’t really realise how strong your connection
Although we never got to
and love is
know her,
For the baby you have yet to meet, Until you are faced with the worst decision in your life
We know what it was and is
Somehow we pulled ourselves together.
She is part of our family’s
to love her. story and we will always
We had to do what we both thought would be best
remember her.
for our baby
She has left us a lifetime
Even though we would be robbed of our hopes and
of love.
dreams for her. It was agonising. But we didn’t want her to suffer. We know in our hearts, that we made the right decision. The mother and father in each of us knows. But it doesn’t make it any easier.
13
J W d u y
hat did I learn from this experience? I am not in control of anything; no matter how much or how little you want something out of life, whatever is meant to be will be. We are all just along for the ride. Trying to change things is no use and a waste of time. ‘Life’s a burst of JOY and PAIN, and then it’s done.’ My son had hypoplastic left heart syndrome (HLHS), and we made the decision to have a surgical termination at 22 weeks on 25 August 2023. It’s true, you do start grieving as soon as you hear the words, ‘I’m so sorry this doesn’t look right’…. But there is a big difference between before and after. Feeling those last kicks and movements just before going to sleep for the procedure. Scared and alone with a friendly stranger holding your hand, comforting you, ‘It’s going to be okay’, followed by medical chatter in the background. The doctor said, ‘Okay, take a deep breath and imagine you are going on a holiday somewhere. Here we go.’ Then there was nothing…
Judy’s
I remember hearing my name, someone calling from a distance, telling me it was time to wake up. It felt like waking up from the deepest sleep I’ve ever been in. I felt tired; I couldn’t wake up. I kept hearing my name and them telling me it was time to wake up. Before I opened my eyes, I felt he was gone, not physically. I felt empty and broken like a piece of my soul was gone with him. I started crying as I opened my eyes. I felt like I was floating, not completely awake but not asleep either. My first words were a quiet, ‘My baby is gone, my baby is gone’... All I wanted was my husband, but I was still in recovery so I couldn’t have him either. I needed a hug, and like a vulnerable child, I asked if the nurse sitting beside my bed, filling in the form with my BP data, could give me one. She said to give her a second and then gave me a hug that didn’t make me feel better at all.
story
It’s lonely. So lonely, but you will find the strength you never knew you had in your weakest moment. No, it’s not a miscarriage! No, it’s not a stillbirth! It’s a termination, a choice… But at the same time, that choice was made for us the moment we conceived, by the universe, fate, or whatever you want to call it. We chose the name Cassiel at five weeks before we even knew the sex. His due date was going to 14
be 28 December 2023. The more we googled the name, the more we fell in love with the meaning. Cassiel - ‘Angel of Tears and Temperance’, also referred to as ‘The Archangel of Duality’. He can help us find harmony and balance when we are feeling low, open up new realities and help us embrace the duality within each of us. Duality is an instance of opposition or contrast between two concepts or two aspects of something, a dualism. By this definition, duality is a fundamental part of our human experience here on earth. We cannot understand light without first experiencing the dark. We need both aspects of an experience to fully integrate our ego into our higher selves, healing the duality within. We need to explore both to end our suffering, accept ourselves fully just as we are and live fearlessly in the NOW, in the present moment, in joy and in sadness. We ARE both, and we are neither. Within this understanding, there is balance. Within this balance, there is harmony. Within this harmony, there is oneness. Within oneness is Love in every moment and every moment is perfect just as it is. The irony of his name from the start summing up the greatest, deepest pain I’ll ever feel with the heaviest heart and living with this grief to strive for joy again and find my happiness again is so serendipitous. His name is my comfort, a sign that it was destined from the start and that my little boy Cassiel knew and understood that too. He IS the angel of my tears and he IS with me and has taught me that wisdom of life. I believe this to my core of being. If nothing bad ever happened we wouldn’t understand how to feel pure joy, love and happiness, and without that intense excitement of life, we also wouldn’t know what misery felt like. You need change as being stuck in one feeling or situation for too long will make you feel complacent and numb, and that in itself can be death… Life is hard enough already; we shouldn’t be hard on ourselves too. It takes great strength to take your deepest pain and find joy again! But finding that makes life worth living! Our children will never be forgotten by us as they are so deeply loved and will ALWAYS be! It’s what we do next that’s important, living that little bit harder and happier like ‘They’ would have, could have, should have… 15
S he i a Sheila’s l Story “Y
our baby has club feet.” These
When we arrived at the car park we were
words marked the beginning our
confronted with chaos. The parking attendant
devastating journey.
shouted at us, telling us to “get out”. Tom dropped me off and had to find some parking near the
As soon as the sonographer told us about our
hospital. I found the correct department. Tom
baby’s feet, I was overcome with shock and fear. I
eventually found me, tired and breathless. We were
felt my eyes well up with tears. She did not explain
called for our scan by the consultant. She asked me
any further details but asked me to go for a walk as
a few questions: was this our first child? No. Is our
she was having trouble seeing our baby’s heart. I
first child healthy? Yes.
ended up walking around the hospital two further times but still she could not properly see our baby’s
I lay on the couch and the consultant
heart. She asked us to wait to see the screening
scanned me quietly. After a long time, she
midwife. We waited and were invited into a room.
informed us that our baby had a ventricular septal
A small room, with beige walls and tissues on the
defect (VSD); a hole in the heart. She could also
table. My husband, Tom, said “I don’t like this room”.
see an echogenic bowel. Overall, the picture she saw suggested that our baby had a chromosomal
The midwife explained that our baby had club feet,
abnormality. The only way to find out was to do
also known as talipes, which meant our baby’s
an amniocentesis. We were taken into another
feet were pointing downwards and inwards. She
room with a specialist midwife. She explained what
reassured us that this is a treatable condition with
they were looking for with the amniocentesis;
surgery and also said we needed to be referred to a
potential genetic conditions and chromosomal
fetal medical unit. We drove home quietly with our
abnormalities. She explained what Down’s,
leaflets about talipes. That afternoon, I received a
Edwards’ and Patau’s syndrome were. She raised
call from the fetal medicine unit asking us to come
the subject of termination, telling us that some
into the hospital the next day.
parents chose to terminate.
16
We waited for further scans that day with the heart specialist who confirmed that our baby had a VSD, but that this could be treated. We left the hospital exhausted and dazed, not knowing that this would be the last day we would see our baby alive. After this, there was nothing to do but wait. We waited for an agonising two days, and I received the call to confirm the news that there had been no indication of Down’s, Edwards’ or Patau’s syndrome. We would now need to wait for the results of further tests where they would look at every chromosome. We received this news on Thursday and were reassured that we would find out early next week. The following week came and went. No results. The uncertainty was excruciating.
deletion short arm. They would have low muscle tone, which would result in difficulty feeding; they
Seventeen days after our referral, we received the
would never be able to walk or talk; they would suffer
news by phone call: “An abnormality has been
from repeated fits. She advised us that this was a very
found”. We were told that it was very rare and
severe outcome for our baby.
complex and that we now needed to wait for a call Since our scan, we knew that were facing the
from the genetics department.
decision of whether we needed to terminate for The next evening, we received a call from a genetic
medical reasons. We had agreed that we would
counsellor who informed us that chromosome 5
never want our baby to suffer if they had a severe,
had been affected; part had been duplicated and
life limiting condition. I never knew that a family
part had been deleted. We asked what this meant
could lose their much-loved baby in this way.
for our baby, but the counsellor told us we needed to see a consultant who would give us further
In the storm of this trauma, we faced other
information. She booked us in for an appointment
decisions: what procedure to have, a medical or
the following week. We begged to be able to go as
surgical termination. We selected the surgical
soon as possible, but the earliest they could see us
termination, which involved a two-day process.
was in five days. She advised us to start considering Four days after our phone call, Tom’s dad drove us
the circumstances for termination.
to the hospital. To start with, we went to the fetal The next day my phone rang again. The person on
medical unit where I was given an injection to stop
the phone introduced herself as a registrar in genetics
our baby’s heart. I lay on the couch and held Tom’s
and asked if we had time to speak. She explained over
hand. The doctor then made preparations for my
the phone that our baby had a significant duplication
surgery the next day. We went back to the hotel
of the short arm of chromosome 5 and a terminal
and rested.
17
Olivia’s story continued The next morning, we attended the theatre. Tom
These words helped me so much on that day and
wasn’t allowed in with me due to Covid restrictions.
every day since. We listened to “Somewhere over
So, I hugged him and said goodbye. The doctors
the Rainbow” and “Twinkle Twinkle Little Star”.
and nurses treated me with such compassion and kindness and I am forever grateful to them for this.
His ashes are scattered in the children’s garden of Lambeth Crematorium. It comforts me to know he
I walked into theatre and lay on the bed. The nurse
is never alone.
and anaesthetist talked about the upcoming Olympics and I put the mask on my face. My last thoughts were
Some months later, we decided on a name for our
of my husband, my daughter and my baby…
little boy. At his funeral the minister said that the babies were infants of St George. We decided to
The next thing I remember was a nurse touching
name him George, in honour of the place his ashes
my shoulder asking me wake up. I woke up crying
are scattered.
and I looked down at my stomach. I was no longer pregnant. I cannot find any words to sum up the
In the weeks and months after our loss, I felt an
despair and pain of that moment. Tom came to
overwhelming sense of isolation and guilt: I didn’t
find me and my parents drove us the fifty-mile
feel part of the baby loss community because this
journey home.
was a decision we took. I am very grateful for the support from ARC; their publications, website and
The days afterwards were the most difficult I have
helpline have helped me to realise that we are not
ever experienced. Alongside the pain of losing
alone in our loss.
our baby, I felt deep regret that we had chosen a surgical termination; I had lost my only ever chance
In February 2023, nineteen months after our
of spending time with my baby. Support from ARC
termination for medical reasons, we welcomed our
and the podcast Time to Talk TFMR has helped me
daughter Bethany Grace into our family. Following
to process these emotions and to treat the person
our loss, Bethany’s pregnancy was a very different
I was at the time with kindness and compassion. I
experience and I had waves of anxiety throughout.
was making decisions from a position of crisis and
Support from my husband, and family and friends
trauma and I chose what I felt best able to cope
really helped me manage my worry.
with at the time. After all, that’s all any of us ever have- the moment we are in.
As I step forward on life’s journey, there will always be my little baby boy with me, just beyond my
We discovered afterwards that our baby was a boy.
reach. George’s life was very brief but made a huge
A month later, we had our baby’s funeral service at
impact on me. I see the world so differently now
Lambeth Crematorium. He shared an adult sized
because of my time with him. He has inspired me
coffin with two other babies. Tom and I, and another
to treasure the time I have with my daughters,
couple went to the service. It was really beautiful.
husband and our family and friends. He has taught
The minister said how truly sorry he was
me how precious life is. Saying goodbye to him
for our loss. He read a poem called “The
was the hardest thing I have ever had to do; with
Snowdrop” with the words: “Every
the support of family, friends and counselling, I
life that ever forms or ever comes
have found peace in knowing that our decision was
to be touches the world in
made with the deepest heartbreak and love for him
a small way for all eternity”.
so that he would never know suffering and pain.
18
ARC INFORMATION AND SUPPORT DAY 2023 O n 4 November, we welcomed members to our Annual Information and Support Day in London. A big thank you to Bryan Cave Leighton Paisner, for once again donating a beautiful space for us to host the day. ARC Chair of Trustees Kate Bennett welcomed everybody and also thanked BLCP for donating the venue for the day. Then ARC Director Jane talked about our work through the year and future plans. Unfortunately, we couldn’t run the ‘expert panel’ as we had hoped as genetic counsellor Dagmar Tapon had laryngitis and therefore no voice at all. Instead, fetal medicine consultant Dr Jasmine Tay from Queen Charlotte’s Hospital in London described her experience of caring for parents through prenatal diagnosis, decisionmaking, TFMR, and subsequent pregnancies. She then took questions from the audience – who were clearly impressed by her sensitivity and empathy.
19
The last session of the morning was led by Mando Meleagrou, expert psychotherapist attached to the Harris Birthright Centre for Fetal medicine in London. Mando provided participants with insights she has gained into the experience of TFMR over her three decades of working with women and couples. She also invited questions and comments from the audience – which had to be curtailed so we could have time for lunch! After lunch, we broke into small groups for facilitated workshop sessions which gave attendees a chance to speak in more detail about their experiences and ask any questions they might have. We have had positive feedback from the day: ‘’ It felt like a huge relief being in a room full of people who understood exactly what we’ve been through. Even if we didn’t talk to every single person individually, the support for each other I thought was palpable.’’ We want to thank everyone who attended and look forward to our event next year!
FINANCE & FUNDRAISING A big thank you to everyone who has fundraised for us over the last four months: Billy’s community fundraising day in memory of Rowan raised over £4500 for ARC. Beshlie and James raised £1370 for ARC by completing the Welsh Three Peaks Challenge. Amy raised £135 for ARC in memory of Arlo. Summer ran the Royal Parks Half Marathon and raised £551 for ARC. Jennifer and Andrew raised £1436 for ARC in memory of Luna. Mairi completed the Aviemore Triathlon and raised £830 for ARC.
Beshlie and James And thank you to everyone who has donated to ARC recently. Here are just a few:
Leon ran a half marathon in support of ARC.
David donated £100 to ARC. Hannah donated £60 to ARC. Phillip donated £100 to ARC. Tracy donated £50 to ARC. Catherine donated £100 to ARC. We would also like to take this opportunity to thank all of our regular givers. Without your support over the years, we would not be able to do the work we do.
Leon 20
Woes and Wonder – Avalanche ‘Avalanche’ by Woes & Wonder (UK based singer/ songwriter/ producer- Liam Stokes) represents a journey through a devestating experience in 2021. Royalties from this release and profits from the sales of the related merchandise will be donated to the charity ARC. You can find the single on Spotify and Apple play. Follow @woes_and_wonder on Instagram for merch and other updates!
ARC CHRISTMAS CARDS
Buy ARC Christmas cards to help support our services! We have one lovely new design for 2023, and two designs from previous years, available on our website for just £5.00 per pack of 10 (including postage). Buy yours today from our online shop: https://www.arc-uk.org/support-us/shop/ 21
ARC Patrons Baroness Thornton
12-15 Crawford Mews, York Street, London W1H 1LX
Juliet Stevenson
Call 020 7713 7356 Email info@arc-uk.org
ARC Board of Trustees Kate Bennett (Chair)
Visit www.arc-uk.org
Francesca Corman (Treasurer)
Facebook www.facebook.com/ antenatalresultsandchoices
Liz Szewcyzk Dagmar Tapon
Twitter www.twitter.com/ARCantenatal
Marie Gerbier
Instagram www.instagram.com/arcantenatal/ Registered charity in England and Wales no. 1148653.
ARC Staff
Registered charity in Scotland no. SC046380.
Jane Fisher Director
Registered company 08085949.
Sally George National Support Coordinator
ARC News is designed by www.carrcreative.co.uk
Hannah Coates Engagement and Development Coordinator
If you no longer wish to receive ARC News, email Rebecca on rebecca@arc-uk.org to be removed from the mailing list.
Jenny Price Liaison and Development Coordinator Rebecca Hawkes Community and Digital Fundraising Officer Hannah McInnes-Dean Research Associate (Maternity Leave) Katy MacWard Fundraising Development Officer Karen McIntosh Coordinator for Scotland Miranda Glen Coordinator for Wales (Maternity Leave) Suzie Heaney Coordinator for Northern Ireland
Opinions expressed within the newsletter are not necessarily those of the trustees. All contributions are welcomed and read, however we are unable to acknowledge receipt of all correspondence and reserve the right to publish or reject material submitted. Any material sent in may be cut or condensed, and all material in the newsletter is copyright. Permission must be obtained from ARC or the copyright holder to reproduce all or parts of articles.
Barbara Riley Finance Coordinator Vic Swift Admin Support
22
YOUR DONATION WILL MAKE A DIFFERENCE... ARC is funded almost entirely by voluntary donations. If you have valued our help and support please help ARC ensure that tomorrow’s anxious parents receive the same. Visit www.arc-uk.org/donate Call 020 7713 7356 Complete the below and return it to: 12-15 Crawford Mews, York Street, London W1H 1LX Thank you for your support
Your Details Title
First Name
Surname
Partner’s Name (optional) Postal address
Postcode Telephone (including area code) Mobile Email Date of Birth (DD/MM/YYYY)
I would like to make a single donation Donate online at www.arc-uk.org/donate I enclose a cheque for £
made payable to: ARC Limited
I would like to make a regular donation Regular donations are really helpful to ARC, if you’d like to set one up visit www.arc-uk.org/donate
I/We would like to make a donation in memory of
Gift aid declaration Increase your donation by 25% at no extra cost to you if you are a UK taxpayer. By signing below I confirm that I am a UK Income or Capital Gains taxpayer. I have read this statement and want ARC (Antenatal Results & Choices) to reclaim tax on the donation detailed below, given on the date shown. I understand that I must pay an amount of tax that is at least equal to the amount of tax that all the charities and CASCs that I donate to, will reclaim on my gifts for the current tax year. I understand that other taxes, such as VAT and Council Tax do not qualify. I understand that the charity will claim 25p of tax on every £1 that I have given.
Signature
Today’s date (DD/MM/YYYY)
ARC and your data We would like to keep you up-to-date about ARC’s achievements and campaigns, please tell us your preferences. Your details will not be passed to any third party. I wish to receive emails from ARC I wish to receive post from ARC I wish to receive telephone calls from ARC You can change your preferences at any time by emailing info@arc-uk.org At ARC we guarantee your details are will not be passed onto any third party organisations.
Thank you for your support Your donation will make a difference.