Baby loss and Sikh bereavement & funeral practises.

We have had people (professionals as well as families) who have come to us to ask for more information about funerals and bereavement practises in relation to baby loss. We acknowledge that this is a sensitive topic and begin this blog post with this trigger warning.

Please continue reading only if you feel comfortable and in the right mind space to do so. This post will cover Sikh bereavement and funeral practises in relation to baby loss.

We have been speaking to Kirren who sadly has gone through these experiences herself - but felt willing to share her knowledge and experience for anyone who would like to learn more.

Hi Kirren! Please first introduce yourself to us:

Hi, I'm Kirren, I'm mother to a daughter who sadly was still born at 6 months old. I identify as Sikh, I'm 32 and it's been three years since my little one passed.

What rituals/traditions take place at the time of death?

At the time of death there is no mandatory requirements but it can be healing and peaceful to have prayers read by a priest If the hospital can provide or very simply via YouTube or Spotify.

How does religion (if at all) affect the grieving process and what are the Sikh beliefs around death?

In Sikhi we believe in hukam. Hukam can be translated to God's will and we thoroughly believe that everything that God wills is for the greater good and you should accept everything that God brings your way with a smile. We have a saying "chardi khalla" which means stay in high spirits. We try to look to our Gurus and their experiences to embody what that might look like. Guru Gobind Singh Ji lost four sons fighting for peace and embodied Chardi khalla. I'm saying this but when my Keerat passed away believe me I was broken, lost, in pain and angry. Im still healing today. I'm human and I think that we have to be kind to ourselves in these instances. We generally believe in reincarnation and your soul wil continue this process until your ready and worthy to sit with God in Heaven. What gave me some peace was to realise that my baby had committed no sin, no bad deeds and her soul was making its last journey straight to God.

Is there a difference between culture and religion in traditions?

Absolutely and you can find yourself in conflicts because sometimes culture and religion can command different rituals and traditions. You should do what makes you feel comfortable. It was important for me that my daughter had her Antim Sanskar which is her final right and her final journey to God so I stuck with religion and followed what was meant to be.

What happens at a Sikh funeral for a baby who has died?

A baby will go through exactly the same Antim Sanskar an adult will go through. My daughter was brought to her home where family and friends paid there last respects and then she was taken to the crematorium where a priest said a prayer, we shared a few words and she was cremated. We then headed to the Gurdwara where Sehaj Paat was read which is the reading of the entire Guru Granth Sahib Ji our holy book. I think the most important and healing part of the funeral for me was the end where a hukamanama, a verse randomly selected from our holy book is read out aloud and is believed to be a conversation between you and God.

With the ashes they should be scattered in open running water which heads to the sea. There are so many boat companies that respect and understand these rituals and can accommodate.

What bereavement practises may be carried out for a baby that has died at an early gestation?

A soul is a soul regardless of gestation period and honestly Antim Sanskar is a right for every Sikh soul which should be carried out where possible. Most hospitals will cremate for you and your local temple can arrange a sukhmanni sahib paat (a smaller reading from our holy book) if you prefer a quieter more intimate ceremony. It's important to know as well that you can go to any gurdwara and ask them to give you a hukamnama if you wanted to hear words from God to time some meaning or clarity to what's happened.

What should healthcare professionals be aware of when supporting Sikh families through the death of a baby?

To be honest it's probably the smaller details, a speaker or method to play paat to help with healing, to understand that devout Sikhs might not process the death in the most natural way and will look to embrace God's will.

A huge thank you to Kirren for working on this blog post with us!

70 years of confidential enquiries & 10 years of MBRRACE - the new report and what we are doing.

Hi everyone - it’s Amneet here! I’m the Project Manager of Community of Cultures.

Last week I attended a really important event online. MBRRACE (Mothers and Babies: Reducing Risk through Audits and Confidential) hosted a conference for the launch of their newest report - and to mark 10 years of MBRRACE led enquiries into maternal deaths and morbidity. The link to the latest reports can be found here: https://www.npeu.ox.ac.uk/mbrrace-uk/reports

The conference was great - with lots of great speakers and presentations. The data and stories of course are distressing and concerning - and whilst things are going in the right direction in some aspects, there is still a lot more work to do.

Some key infographics:

It is great news that the gap is closing - with Black women being 3.7x more likely, Asian women 1.8 x more likely and Mixed ethnicity women being 1.3x more likely to die due to childbirth/pregnancy complications than white counterparts. The figures are improving, BUT there is still such a disparity and the great work that is happening needs to continue. There is always room for more work to help reduce inequalities.

Some very distressing figures have emerged around maternal suicide rates. The pandemic has hit many people in different ways - and the impact has been huge on mental health. The statistics we are seeing here may well be indicative of the start of the crisis we are facing with mental health.

We can also see from the Perinatal Mortality Surveillance Report (data from 2016-2020) that some ethnic groups are more affected by high rates of stillbirth and neonatal death associated with deprivation.


So what are we doing at Community of Cultures?

It was very useful to be at the MBRRACE conference and to read the latest reports. We maintain a big focus on delivering our Cultural Competency and Safety training to healthcare professionals and birth workers. We know from reports released and from lived experience that racism can sometimes play a part in standards of care received. We believe it is important that all professionals are given the opportunity to address their own biases and to reflect, pause for thought and to plan how they can create a service that is culturally safe. We have trained many Trusts and teams and have bookings well into 2023. University Maternity course teams have started to work with us too and we have also worked with some VCSE organisations. We feel this is an important part in helping to reduce those inequalities figures.

We also maintain our focus on providing safe spaces for people from Black, Asian and Ethnic communities to explore the fertility journey and to get support for baby loss. We can see from the statistics above that stillbirth rates and neonatal death rates are higher amongst different communities. Support is definitely needed for these communities and we are keen to help provide some support.

We are also hoping to look further into the support spaces we can offer around perinatal mental health - particularly looking at mental health in the postnatal period. There is a clear need for support in this area and many communities have their own challenges that they face around the topic of mental health. We want to be able to offer specific support for Black, Asian and Ethnic families.

For more information about our work or to ask about booking our Cultural Competency courses, please email us at [email protected]


Interview with Sunita Banga - EDI Lead Midwife

Welcome to our new CoC blog post! We are delighted to have an interview with Sunita Banga - an EDI Lead Midwife who has been doing amazing work in Wolverhampton. Sunita has created a group in Wolverhampton for parents who don’t speak English as a first language. Read our interview to find out more!

  1. Please tell us about what being an EDI lead midwife involves.

Sunita: EDI (Equality, Diversity and Inclusion) midwives are few and far between. There are not many of us and the role is new to our Trust. My role involves being a specialist for the refugee and asylum seekers that are dispersed to the host hotels in Wolverhampton. They still have a community midwife but I see the pregnant ladies on a one to one basis at some point during their pregnancy and make sure they are supported. This may include antenatal, intrapartum and postnatal education. It may be that they need donations of maternity clothes, baby clothes and other baby items. It may be just being on hand to answer any questions that they may have in their own languages. I do use telephone interpreters. There are many aspects of my role, I also attend regular teams meeting with the LMNS (local maternity and neonatal systems), and various other EDI meetings in the Black Country. I am also currently looking at EDI issues withing the Trust (for example Stillbirths) and preparing for a presentation about the recent maternity reports (five x more, birthrights and the Invisible maternity report) to be delivered to the Doctors and Midwives within the unit. I also liaise very closely with the EDI leads within the Black Country and we work together, this is immensely supportive to me as I am the newest in the role as an EDI lead.

2. What was it that motivated you to start the group in Wolverhampton for parents who don't speak English as a first language? Please tell us more about how this group runs.

The motivation to start the group came from my previous community midwifery experience (17 years). I came across many women who were just struggling with isolation, poverty, digital poverty, not having that family support network, not understanding the language, mental health concerns, domestic abuse etc. The hospital provide a robust antenatal and postnatal education programme, so this is great if you speak English and have access to a smart phone, tablet or computer. But what about the women that don’t? They miss out. So when I started my new role (June 2022), I decided to set the support group up for Black, Asian and Minority Ethnic women to provide exactly that - the parent education aspect as well as somewhere to meet other mothers to be, have a cup of tea and a chat, a safe space where they can also access mental health support (by Positive Participation who are an award winning mental health service in Wolverhampton). This was important as if the women to not meet the criteria for perinatal mental health support then they are directed to the GP, this may or may not be enough for some women, they may or may not be prescribed antidepressants or referred to a counselling service that has a 6 month wait. Some of the women we see need support sooner rather than later. So Gurbax Kaur (Practitioner Manager from Positive Participation) and myself set up SAHARA maternity support group. (SAHARA means SUPPORT). I speak Punjabi and will be using interpreters for the other languages if needed.

3. What do you think are the current barriers and challenges to accessing maternal healthcare for people who don't speak English as a first language?

The current barriers and challenges to accessing maternal healthcare for people who do not speak English as a first language are concerning. Let’s look at a women who does not speak English, even daily tasks can be challenging. For example going to the hospital for a scan. Imagine you are an asylum seeker, new to the country, you have been booked by the community midwife and now have a scan appointment at the hospital. You have no idea where to go, how to get the bus to the hospital, have very little disposable income to spend on traveling, cannot ask for directions as you do not speak English, and when you get to the hospital, you do not know where to go. It’s not as easy as “just get to your appointment on time”. Many ladies get lost, confused, frightened of authority and to put it frankly, sometimes its easier just not to go. Then this is recorded a s a DNA (did not attend) and another appointment is sent out only for the same to happen again. In the meantime she is missing having her scan, NT screening and blood tests done in a timely manner. Several DNA’s then require a referral to MASH (multi Agency safeguarding Hub) as per DNA policy but not speaking English is not true safeguarding concern, so this would be an inaccurate referral. Another challenge is using interpreters, sometimes we cannot fine the interpreter that is needed for a particular language. Interpreters are sometimes face to face or over the telephone, pregnant women prefer a female interpreter but sometimes they are male due the availability of the language. This makes women not open up about some issues during their pregnancy as they are culturally modest in front of a male, perhaps they may chose not to mention a personal or intimate problem or issue if the interpreter is a male. Women can feel intimidated, scared, nervous, and helpless in these situations.

4. How simple or challenging have you found it setting up the support group in Wolverhampton?

Setting up the group was challenging in itself. You have to find the right venue and cover the cost. The venue we have is a community centre, easy access to and from the town by bus, the room has a sink and a disabled toilet with baby changing facilities. There is a kitchen onsite where I can access hot water for refreshments with ease. There is also a café area with seating where people can socialise and eat and drink if they would like to. Finding the venue took time, some of the others were just not suitable. Once we had found the venue we decided to launch in September (due to August and people being away on holidays etc). This group is very new and literally in its infancy. The challenge now is to continue to share it with pregnant women so that they are reminded that it is running every week.

5. What would your advice be to someone in another area of the country who would like to set up something similar?

My advice to anyone that is considering doing this in another area is to go ahead and set it up, find a nice warm, welcoming venue and do your research on what people in the area need. Then plan to cater for those needs. I decided to start with Punjabi as it is the top one of five non English languages spoke at our Trust. But if the top language was Romanian for example then I would have had face to face interpreters in for that session. You needs lots of passion and determination to fulfil the EDI role as a midwife, you need to be driven, self-motivated and hard working with an exceptional level of communication skills.

A huge thank you to Sunita for speaking with us!

Sarina and Vic's story of baby loss and the creation of Himmat Collective

This blog post shares someone’s real, valid lived experience. We acknowledge that some people may find discomfort in reading. It is important to acknowledge that we are giving this person the opportunity to amplify their voice and tell their story. It is important never to make blanket assumptions about people from particular cultures/communities.

Hi, my name is Sarina and this is my story of our Baby Dinosaur and our Baby Butterfly. My Angels above, my brightest stars in the sky. The ones that changed my world, the ones who made me a Mum.


I met my husband in 2015, and we have been married since 2017. We always planned to travel before starting a family, and at 24 years old, we thought we had time. Time to spend together before starting a family, because in our minds, when we decided we wanted children, it would just happen. I feel like that's how you are brought up because fertility struggles, miscarriage and baby loss is just not talked about in both the Punjabi community and when learning about having babies. It's not one of those topics that you sit down to talk about over a cup of tea. Its hidden, locked away in this cupboard of shame and judgement.

After travelling the most part of the world, COVID hit, and we decided that we would start trying for a family. There couldn't have been a better time! We were in lockdown, spending time together and if we did get pregnant, it was the perfect time to get that much needed rest in the first trimester that everyone warned us about!

The first time we fell pregnant, it took us around 7 months to conceive, but I could never forget the date we found out about our Baby Dinosaur. 12th November 2020, 4 years to the day my husband Vik asked me to marry him, we got the best news of our life. We finally saw those 2 lines. Excitement set in, my body now carried life & our lives were set to change. This couple was about to become a 3. Another test the following morning confirmed this & we finally saw the word we had been waiting for. I was pregnant. 

Those first few weeks were amazing, we were extra careful but slowly the worry started to set in with some early bleeding and at 5 and a half weeks, I had some more bleeding. Fear set in for the life that was growing inside me, it was a fear I had never experienced before, but a trip to the hospital confirmed that we were okay. I was told it was a bit of delayed implantation bleeding and the worry started to settle. It was then I got to see a tiny human with a flutter of a heartbeat, that would change my life. My world now revolved around this tiny heart inside me, and I knew I needed to protect him or her. Vik couldn't be with me because of COVID, but knowing we were okay was enough.

Christmas came & went that year, our excitement was directed elsewhere, and we dreamt of how the following year would be different, a baby would be here & we all talked of the things we would do to make the first Christmas the most perfect. 


Soon after, on the 28th December 2020, our world came crashing down around us. From feeling excitement, love & happiness, the clouds around us turned dark and heartbreak set in. It was a snowy morning and we got ourselves ready to hear our baby’s heartbeat. 10 weeks and 5 days had passed since we saw those 2 lines we had waited almost a year for. We sat in the waiting room, excited, looking at those heartbeat teddies & promised ourselves that once we heard that beautiful heart beating, we would get one to show our baby what their heart sounded like at 10 weeks old. After waiting for what felt like a lifetime, it was our turn. We walked into that room, ready to hear our future but it wasn’t meant to be. After scanning me, silence filled the room, the nurse asked if she could do an internal scan and my heart sank. From that moment I knew something was wrong. 

She asked me how far along I was and I replied with 10 and a half weeks. I asked if something was wrong & the heartbreaking news came. “I’m sorry, there’s no heartbeat.” Silence, darkness and broken hearts filled the room & I felt as if my world had been pulled from under me; the silent tears began. I never knew that 6 words could punch you in the heart so fiercely. People often talk about loss and say that when they lose someone they love, they can literally feel their heart breaking. I never believed this until this moment. Looking across at Vik, I felt like a failure and my heart broke again. Today was meant to be perfect for him, but I couldn’t carry this life for longer than 7 weeks, my body just stopped. With no explanation as to why. I apologised to him because guilt set in & questions of doubt overwhelmed me. I never understood why I immediately felt this way but on reflection, I think it was a feeling of expectation. Particularly in the Punjabi community, I feel that expectations are constant in a Punjabi woman's life. The expectation to be a good daughter, a good wife, the expectation to be a good daughter in law, and the expectation to create a family. But I failed at this, and that's why my immediate reaction was to apologise.

Back in the ultrasound room, my brain began to run 100mph. Was it something I did? Maybe we shouldn’t have gone Christmas shopping? I was running around making sure all the gifts were bought. Maybe I got too stressed about work? Questions filled my head and I just went blank. I silently got dressed while the tears continued and I sat in Vik's arms, tears filling my soul, I sobbed uncontrollably. He was my complete strength in that very moment, a moment only we shared, a moment I will never forget. Without him, I don’t know how I would have managed to walk through that clinic surrounded by other pregnant women. That moment bought us incredibly closer, the loss of a piece of us both pulled our hearts together and as if they weren’t already aligned, they definitely were now. 

To the women that have to hear those heart crushing 6 words, I feel your pain. To hear the words “I’m sorry, there’s no heartbeat” makes you feel like your entire future has been taken from you in mere seconds. You feel your heart break like you’ve never felt before because a body that once held life now holds death. 

The rest of that week, I felt numb. Vik, being incredibly strong, broke the news to our family and the small number of friends we told. Mom, being the strong, courageous woman she is replayed her own experience, physically and mentally helping me through this torture. Between them, they dealt with the calls, texts and everything that goes along with it. I knew that our families and friends were trying their hardest to be there for us, but it was all so very new for them too. I cried, for what felt like weeks. Nothing prepares you for loss that you didn’t expect, and somehow, it’s different to losing someone you’ve known in your life, in human form. Because this loss raises the what ifs & the never-ending wonder of what our baby would have been like. No explanation, no reason our baby left us except that there must have been an ‘incompatibility with life’. What does that mean? At that moment, it’s just not enough. Grief and anger take over your being, until you are left with no choice but to accept that it’s God's will.

Following a trip to our local hospital for them to tell me what I already knew, they sent me home and told me to wait for everything to pass. Those were the longest 5 days of my life. I hid out in my room, I didn't want to talk to anyone, I just wanted to be alone. As if the mental pain wasn't enough already, the physical side of this miscarriage was just beginning. I thought I was mentally prepared but in reality, I had no idea what I was about to face. My body finally recognised the truth and accepted it, but for some reason, my body still held on to a life that once lived inside of me. It refused to let go. So, after a few hours of being in the hospital, we were asked to come back the next day to medically manage the process of giving birth to a baby we wouldn’t be able to take home. We painfully packed my bags to go in, and I was armed with things to keep my mind occupied. 

After getting to the hospital, I was shown to my room and told to make myself comfortable. The nurse went through the process once more and I agreed I was happy to continue. But was I really happy to continue? An odd choice of words. Next came the most invasive and painful 2 days of my life. It was lonely, mentally and physically traumatic & when I needed my strength the most, he couldn’t be there due to COVID. Endless FaceTime calls and phone calls with tears would just have to suffice. 


The first 4 pessaries were inserted, I was told this was to dilate my cervix, but I was so confused. Our baby wasn’t ready to be born so why was I being treated as if I was in labour? Knowing you have to go through labour but without having a child to bring home is the most heartbreaking process your body has to go through. And no matter how early your loss is, your body feels all the same processes. After 2 hours and a lot of sleep, nothing had started. The next dose was given at 2pm, and another at 4pm. Finally, the last round of medication was given at 6pm in the hope that my body would finally let go.


The next thing that I remember was feeling a pop down below and the strangest sensation. I can only imagine this is how it feels when your waters break and you know your child is ready to come into this world. But ours wasn’t and so the bleeding began. And surprisingly it was painful but manageable. I thought then that I could do this and although uncomfortable, I could get through it. This lasted for 4 hours until then I felt pain like no other. Lower abdominal pain took over my body and an urge to go to the toilet came over me. At this moment, I had the worst experience of my life. I just remember bleeding profusely and a nurse trying to reassure me that it was okay. A stark contrast to how I imagined it would be once our Dinosaur was ready to come to us. My legs turned to jelly and feeling faint took over my soul. I pulled the cord and nurses rushed in. I think I had passed our baby but everything felt like a blur and I got back to my bed when a nurse rushed in and told me the doctor was coming because of how much blood I had lost. I called Vik, it must have been 2am by now and I was terrified, anxious with a million questions running through my head. My body couldn’t take any more. The night was spent in agony, the doctor telling me he had to get out as much tissue as he could and there was a possibility I needed to go to theatre. I just remember feeling someone tugging at my insides below. Fear, loss, grief, anxiety, and overwhelming emotions controlled my mind and body. Sleep escaped me & I longed for Viks arms that would wrap my soul up & take the pain away. I prayed to God to keep me safe that night & he didn’t fail me. 


Thankfully, the bleeding had slowed and after seeing the doctor I could finally go home. I was so thankful I could just get out of this hospital. My body however was exhausted, traumatised from losing that amount of blood and giving birth to an angel baby that we could not keep. I birthed our Baby Dinosaur with love & hoped that the Angels would keep them safe in their arms until we could be together again. The one solace in giving our Baby Dinosaur to the angels, was knowing there was an abundance of love up there for me & Vik, in the form of our grandparents, great grandparents & uncles, so our beautiful angel would never go without that love & safety we had the pleasure of feeling. We somehow knew our little Dinosaur was safe in their arms. 


Seeing Vik the day it was all over gave me the strength to leave that hospital without our baby.  I remember him waiting outside of the door to the ward because of COVID and once I saw him, I just wanted to collapse in his arms. He held me in his arms and kept me safe just like I needed at that very moment. He brought me home and washed away the trauma, helping to bring me back to life in those moments. His strength through our loss has been beyond compare and made me fall in love with him so much deeper. Grief and pain brought us closer together but the healing is a new journey that we are on. The journey of navigating life after loss is a different one, and going through loss really does change you.


To our darling Baby Dinosaur, keep shining your light in the sky because we will forever celebrate your short life with us. You were loved more than our love combined & held for 10 weeks that changed our lives. You will forever be our star in the sky, you will forever be the light of our lives. Because in your short life, you made us parents for the first time. And nothing can take that away from us. So, all of this, everything we do is for you. Breaking down the stigma, opening up these conversations, is all for you. You taught us lessons that no one else ever could. You made us stronger than we ever thought possible. And you are still helping us to break down those barriers. You were ours & we were yours. Now, forever, always & never a day less.

Our second loss came much sooner than expected, and as I had to go back for numerous appointments, I wasn't discharged from the hospital appointments until February. 

I found out I was pregnant again in May, but both our reactions were different to the first time. We were incredibly anxious and surrounded by fear. We only knew about our Baby Butterfly for 3 days before our baby left us, and in a sense, the second miscarriage was more traumatic than the first. Bleeding began, and I just cried my heart out. it just got heavier, and I was rushed into hospital to be told what i already knew. We were losing our second baby. Losing so much blood made me feel weak, and the pain was so much more intense this time around. I remember being told I would have to stay in and was given a mixture of gas and air, paracetamol and eventually a tramadol injection to help the pain. I just needed Vik. This time I was fortunate enough that the nurses allowed him to stay with me, and I think this is truly when he began to understand the trauma my body was facing. The bleeding and pain would not stop, so I was told by the consultant that the best course of action would be an MVA. It was painful, intrusive and simply scary. I still struggle to talk about my second experiences, and after that I just needed time to heal. I was put off of trying for a baby, and felt that at that moment, I needed to heal my body and mind before we tried again. We named our second baby our Baby Butterfly, the one who left too soon, before we had a chance to admire their beauty. But our Baby Butterfly was the one who reminded us that transformations are born through patience, struggles and loss. The one who showed us that we must have patience and resilience to ride the storm while rebuilding ourselves.

Earlier this year, I was approached by the team at Taraki to host a Womens session in February to talk about my experience of loss. I wasn't sure I was ready but I was not going to pass up the opportunity to share our story, in the hope that it would help other women heal themselves. Following this, Amneet from Community and Cultures and Shuranjeet, from Taraki, got in touch and we talked about how this space was needed, particularly for the Punjabi Community. We began to put a plan in place from March and Himmat Collective was created in June this year. Himmat Collective regularly holds safe and supportive sessions to help women, men, couples and their families heal from the heartbreak of baby loss, miscarriage and fertility struggles. We aim to refresh the approach to loss in the Punjabi community and hope that we can break the stigma of miscarriage, the idea of shame that currently surrounds this topic. In the future, we would want educate our younger generations about potential fertility issues, while letting them know it is okay to talk about their experiences and create a safe environment for them to do this. 

Myself and Vik are so incredibly grateful to our family and friends that have been there through our fertility journey and helped us through our losses, you all know who you are and we couldn't have got through it without you. Thank you for not letting our babies be forgotten in this world. To the amazing people we have met through our loss journey and have been lucky to work with and become friends with, you are all SO incredibly special. Your strength and love in this world are inspiring.

To all the couples that are scared & have to go through this, remember you are not alone. Our door will always be open to you for advice, love & healing. We got through this and so can you.

If you would like further support following pregnancy loss, there are a number of charities and organisations that can offer support (SANDS and Tommy’s are two big baby loss charities). At the SMC, we offer a virtual loss support space and the Community of Cultures project is planning some further loss support spaces just for people from Black, Asian and Ethnic communities. We are partnering with Himmat Collective to deliver some virtual spaces exploring baby loss and fertility just for Punjabi communities.

Amneet's community leave! Willow's Rainbow Box 'Rainbow Baby Week'

At the SMC, we have recently created a policy where our workers can take 2 days of leave each year to get involved in community work that matters to them.

Our Project Manager for Community of Cultures took her leave at the end of August and this blog is all about what she got up to!

Amneet:

Hello everyone! As well as being Project Manager for CoC at Sheffield Maternity Cooperative, I am the Chair and Founder of the charity ‘Willow’s Rainbow Box.’ This charity supports families through a new pregnancy after the loss of a baby. At the end of August, I used my community leave to work on our ‘Rainbow Baby Week.’

During the week, we were busy raising awareness of pregnancy after loss. We launched our web shop and our new resource (above) that’s available in our comfort boxes in Newcastle upon Tyne and surrounding areas. The resource is also available for download on our website for people to download and print. They are aimed to use with your healthcare professional - something to show them if you don’t want to repeat your story or say too much. Our hope and support cards are also available on our website for download: www.willowsrainbowbox.co.uk

Here are our fabulous boxes! They are designed to help reduce anxiety and promote positive mental health and wellbeing and at the moment are available for families in Newcastle upon Tyne, Northumberland, Gateshead, Durham, Sunderland, North and South Tyneside.

HOWEVER - exciting news! In the next 6 months, we are planning to bring our boxes to Sheffield and Nottingham! We are currently trying to raise funds to help us to do this.

It was such a busy week but time well spent and I’m so thankful to the SMC for allowing me the time to do this work.


Community of Cultures - 'Black All Year' podcast

We have exciting news! We are going to be guests on a podcast!

The ‘Black All Year’ podcast was born to celebrate, recognise, support and educate around Black issues all year around. Whilst Black History Month is a great month to raise awareness of issues, these issues are just as important at all other times in the year. Steph Edusei is the podcast host.

Steph is a Non-Executive Director of the Newcastle upon Tyne Hospitals NHS Foundation Trust and the Chief Executive of St Oswald’s Hospice. She was named Transformational Leader in the Northern Power Women Awards 2022.

Our Project Manager, Amneet, reached out to Steph shortly after the Birthrights inquiry and FiveXMore reports were launched. We wanted to highlight the importance of cultural competency training and to raise awareness of the inequalities in maternal healthcare. Steph has invited us to create a podcast episode dedicated to this topic.

Amneet will be joined by Patrice and Afshan - 2 of our Cultural Competency workshop facilitators. We are very excited that Steph has invited us to share about this topic on this amazing podcast! We will be recording the episode in early August and will send out information when it is ready to listen to!

https://www.blackallyear.co.uk/

Sadia's story of baby loss due to Autosomal Dominant Polycystic Kidney Disease

Sadia’s blog post about baby loss due to a genetic condition.

I lost my baby daughter in 2010 due to a cord prolapse. Cord prolapses are common when the pregnancy progresses without amniotic fluid from 20 weeks onwards. The reason there was no amniotic fluid is due to enlarge kidneys; a fault that is genetically passed down from the baby’s mother and father. There is a higher risk of there being a fault when the couple are related; my husband and I, are first cousins.

I was ‘married off’ at 16, whilst still at school, to a cousin I had never met. Back then, 20 or so years ago, there was not really much safeguarding in place for girls like myself, who found their marriages arranged and unable to disagree with their parents (I did protest but I was told my parents that they know best and if I loved them I should oblige; this kind of manipulation is very common in my Pakistani community).

Anyway, fast forward 6 years, me rebelling the ‘aunties’ by not wanting children, to becoming broody and wanting to have a baby. Luckily, my husband was not the horror story I had imagined, something rare I know, and I say ‘lucky’ because I know of much worse outcomes for others in my situation.

My first son was born in 2004, a very normal pregnancy, no issues, no mention really of risk in consanguineous couples. The risks I only became aware of when me sister had her second child that was affected with the condition ARPKD (Autosomal Recessive Polycystic Kidney Disease) which meant that the kidneys fail to develop and cannot filer amniotic fluid, leading to them becoming enlarged. The reduction of amniotic fluid leads to underdeveloped lungs, meaning the that the baby cannot breathe when born. The earlier the condition is diagnosed in utero; the worse the outcome. Couples that are not related also carry faulty genes but the chance of this happening is higher in cousin marriages due to the limited size of the gene pool if generations have practiced this custom. 

Although my sister lost her baby in 2005, we were unaware of the high risks to ourselves as we thought it was a faulty gene my sister and her husband carried (both first cousins also). My sister lost another baby in 2008 to the same condition and was offered genetic counselling, but still as a family we thought this was something the couple had to deal with and it didn’t affect the rest of us.

In 2010, at my 5 month scan, the sonographer informed me there was no amniotic fluid surrounding my baby, I still remember the feeling of shock and just instantly knowing what I was about to face - I knew exactly what the condition was and informed him. That’s when the realisation occurred; of the high risk of genetic abnormalities in cousin marriages.

My baby was born at 31 weeks, a long labour, unmonitored because it is know the baby is in distress but nothing can be done to help, a c section was not performed, the reason being to give me more of a chance of trying again for another baby, it really felt like everyone had just given up on my baby. No interventions were granted due to risks, I wanted to try amnioinfusion where fluid is pumped into the amniotic sac to help mature the lungs, but this is not offered in the UK. 

When I presented at hospital with a possible cord prolapse, all hell broke loose and the room I was in quickly became full of people poking and prodding me, preparing me for theatre and pumping my bladder with water to help the baby, until the consultant walked in and told everyone to stop because they know me and know the baby had a condition that was ‘lethal and incompatible with life’. 

Those words still haunt me and I lost all trust with authority and health professionals, I felt it was so unfair to be treated in this way; to just give up. Babies can survive and more so due to medical advances.  

I had to fight for an epidural and endured a very long traumatic birth, when I did give birth I was afraid to look at my baby as the cord had been wrapped around her neck 4 times and her swollen face scared me. After the swelling started reducing, her features resembled that of a normal baby. 

We had arranged for a Muslim burial, even at her funeral some relatives refused to offer a prayer at her graveside as they usually would with a baby that had taken a breath. Hearing that made me upset because it wouldn’t kill someone to offer a prayer whether it was accepted or not. She was stillborn but she did exist!

Talking about my loss was difficult, I did not want to upset my sister by taking to her, relatives came to offer support but it felt more like pity and duty to show their face than real empathy. 

I was on a mission to have a healthy baby, a sibling for my son so kept my mind off my loss as much as possible, just wanting to get back to ‘normal’. I got pregnant again within a few months and had a healthy baby boy. I have 4 healthy sons, each pregnancy after my loss was stressful and I don’t think you ever just relax even when they are born screaming the roof off!

My family was tested for the condition and we found out that both my parents (who are first cousins) carry this faulty gene! They are lucky to have 7 healthy children not affected by the condition however, two of us are carriers and two of us are married to cousins and two of us have suffered losses (my sister having suffered 5 losses; 3 full term and 2 terminations after CVS revealed babies were affected).

When trying to access support I have found that there is a hierarchy of loss, with genetic conditions and cousin marriages looked down upon by other people. It has been difficult to find support. I have found some online spaces that don’t judge such as Community of Cultures, that cater to a wider community so it feels safer than one that is just for the Pakistani community; where I feel there is a lack of understanding and compassion.

When I do try to talk to others from the community it’s as if they are scared of me, they find me weird for openly talking about my loss and that I must be causing them bad luck or cursing them in some way. 

Talking about losses is taboo, we are supposed to hold high faith and leave everything up to God however, even within my religion it says we needs to take responsibility.

I have been working to raise awareness of the risks associated with cousin marriages. I do have healthy children and am so grateful, but I have lost a baby and we have 6 losses within my family. 

I want people to be aware of risks and the steps they can take to address them, genetic counselling is available for couples considering  starting a family. I wish I had known earlier that we carry this faulty gene. IVF with PGD testing is available along with CVS during early pregnancy and then early termination as an option; again another taboo topic. 

Some of us are unlucky, we face these situation and we should be encouraged to talk about them openly. 

When going through my loss, I was looking for others who I could relate to, to understand what it was that I would be facing and to know that people get through this and everything will be ok.

Had I known about these risks involved in cousin marriages, I could have even challenged my parents about their choice!

I believe we need to have these conversations within our community and families.People need to hear the good, bad and ugly truths from the people who have experienced them. 

In trying to raise awareness I have received mixed responses from health professionals within my community who are worried about what it is that I talk about; I just talk about my lived experience. I’m not telling people to ban cousin marriages; I’m telling them to be aware of the risks and of some of the solutions that are out there, so they can challenge health professionals, make informed choices and get the best outcomes for their baby. 

Everybody gives up when a baby is ‘incompatible with life’ they don’t see the hope we as parents do. 

I would request health professionals to not worry about what the majority of people within the community think as they are not experiencing genetic losses and to target support for those going through genetic diagnosis or carrying babies with genetic conditions. 

My wish is that more parents speak out and seek and offer support to others so that the subject is not taboo and that we can build empathy and compassion within the community. 

Signposting: People can access support for baby loss and for parenting from lots of charities and organisations. Here are a few:

SANDS (Stillbirth and Neonatal Death Charity) - https://www.sands.org.uk/

Tommy’s (together for every baby) - https://www.tommys.org/

Approachable Parenting - https://approachableparenting.org/lockdown/

From the cradle … A co-op start to life

This week Anna and Phoebe feature in Coop News’ article on Coops that support people at different stages of life.

We’re very please to be featured in this week’s article on the Coop News site.

Thanks to everyone who contributed.

Logo by thenews.coop/uk/

SMC chose the co-op structure over the charity model so it could respond quickly to community needs, says Phoebe. “A lot of the stuff we do is families coming to us and going, ‘we need this’ and we go, ‘right, we’ll do that then’.” For example, it set up a support group for families with babies in special care units.

Read the article here!

SMC zine project - Now Published !

We are very pleased to publish the results of the SMC zine project that took place in the summer of 2021!

With funding from Healthwatch Sheffield we ran several workshops that allowed people to discuss and express their experiences with the aim of producing a zine which compiles the experiences of pregnancy, abortion and loss during the pandemic as well as a report on suggestions for the improvement of services in Sheffield.

In the summer of 2021, a group of women met weekly to create and talk

As they painted, and drew, listened and stretched tired limbs

As they pushed fingers into clay, and cut images into fabric and paper

They discussed their birth experiences, lived in the midst of a pandemic

Here is an offering of what they shared

Physical copies will be sent out to members and those who took part but digital copies can be downloaded below!

Thank you so much to everyone that took part and contributed work or took part in discussions. It was a pleasure to share the space with you.

We at the SMC would like to thank Healthwatch Sheffield for making this project possible. Not only have we been able to hear direct accounts of experiences surrounding pregnancy from people who would not normally be given a voice, we have made connections with the community which hopefully will allow us to contribute better care to individuals in the future.