Almost every family has lost at least one close relative or friend to the pandemic in the last 18 months. However, there is no greater loss than losing a child, a baby who couldn’t even say his or her first word, or walk a few steps on their little toes. Grieving is sometimes a luxury. Labour Party MP for Luton North, Sara Owen is introducing a bill to extend paid bereavement leave to people who miscarry before 24 weeks. Sharing her story of losing a baby in an OpEd in The Independent, Owen said, “Two and a half years after my last miscarriage, I can’t believe this gross unfairness is justifiable in 2021, yet that is what the law currently is for anyone who loses a baby before 24 weeks.”
“The law urgently needs to catch up with society to allow the time to grieve and heal. Miscarriage can make you sick, but it isn’t an illness; it is time the law stopped treating it like one,” she added.
Leading baby loss charity ‘Sands’ has called for urgent action on Asian baby death, highlighting a worrying and unjust inequality in the risk of a baby dying in the UK. Around 14 babies die before, during or soon after birth in the UK every day. Sands estimates that had a stillbirth and neonatal death rates for Black and Asian babies been the same as for White babies, 432 fewer babies would have died in 2019 in England and Wales.
This inequity is backed up by a new analysis, released by MBRRACE-UK, of the multidimensional effects of ethnicity, deprivation, and mother’s age on baby deaths in 2019 in the UK, which shows that multiple risk factors can combine to magnify the risk, deepening inequalities for some families. Of the babies that died in 2019, two-third of Black babies, half of Asian babies and one-third of white babies lived in deprived areas, showing the cumulative impact of inequality on perinatal outcomes. Babies most at risk of neonatal death are those born to Black or Asian mothers who are under 25 or over 35 and living in the most deprived areas. The charity is calling on the Government to urgently fund an enquiry into Asian and British Asian baby deaths in the UK, as they have already for Black and Black British baby deaths.
Asian Voice spoke to mothers of Asian origin in Britain, who have suffered miscarriages, baby loss and stillbirth. They valiantly shared their learnings, pain and compassionate messages for fellow Asians, who need to be educated about stillbirth and baby loss.
The rainbow baby
“I always knew the risk of miscarriage but associated it with the first three months of pregnancy. I always thought after getting to that magic 12-week scan, you were safe from loss. The possibility of stillbirth or neonatal death didn't even occur to me. I had no idea that as a British Asian expecting mum, I was more at risk of losing my baby,” Priya Vara, a mother who has suffered the loss of not one, but two babies, told Asian Voice. Priya lost her son Shayen to stillbirth, and another baby at 12 weeks. She has been documenting her journey on her blog: www.myrainbowbaby.co.uk.
On 30 August 2017, Priya gave birth to a boy named Shayen. Speaking to the newsweekly, Priya explained how she had a low-risk pregnancy with no complications, all her scans showed that Shayen was growing well. “I was actually overdue and at 40 weeks plus 5 days. I went into labour naturally at home. I felt Shayen moving in my stomach before we left for the hospital.”
Upon arrival at the hospital, the midwives checked her vitals but the doppler device couldn’t detect a heartbeat. But Priya and her husband didn’t panic at this point as there were several reasons why a doppler might not pick up a heartbeat.
‘I’m so sorry’, said a young man, and Priya turned to her husband and asked, “What is he sorry about?" He told her, “Your baby… it doesn't have a heartbeat... it's gone.” Priya and her husband decided not to do a postmortem as they didn't believe there was anything that anyone could tell them differently and make them feel better.
Medical help could do with some improvement
Priya went on to tell us, “In terms of medical help, we cannot thank the midwives and doctors and Hillingdon Hospital for all of the love and support they have showed us. I went on to have another child after Shayen and the care I have received has been second to none. Even after me, my husband and my 3-year-old received bereavement care which was like counselling that was offered through our local GP.”
Sharing how the hospital despite being equipped to handle such cases could have been better, Priya added, “Don’t get me wrong – I couldn’t have wished for a more amazing group of midwives at Hillingdon who gave me care that was out of this world. The surroundings could definitely have been improved though. We therefore over the last 2 years raised £50,000 to help Hillingdon Hospital build a maternity bereavement suite. The suite is due to be finished by the end of this year.”
Processing grief
What most people tend to forget in pain and loss, is the fact that even during stillbirth, the mother physically and emotionally goes through labour to bring the baby into the world. Fortunately, Priya and Kevin had the rock-solid emotional support of their families to navigate through these unfathomable times.
Priya said, “Grief, in general, is really hard to go through. But a child’s loss is by far the worst type of grief. In the beginning, straight after losing Shayen, we controlled who we saw and honestly our circle was very small for around 6 months. I didn't really want to see anyone apart from close family and a few friends. I’m going to sound harsh here, but people are hard work.”
After losing Shayen, Priya’s local GP contacted her and asked if she needed any counselling. She had the option to wait for a referral to a qualified counsellor which could take up to 6 months, or head to the actual GP surgery which has a bereavement support group where she could see someone within a week.
She chose to go with the volunteer service where she met Julie, who held sessions with Priya and her husband. Julie even visited Priya’s daughter's nursery and did play therapy with her.
Message to fellow Asians in the UK
When Priya was asked about what she would like to convey to other Asian mothers, she told us, “After losing Shayen, we made the decision to focus on raising awareness on this topic that is still very much taboo. My husband and I appeared on TV to talk about our loss and after that, so many people (mainly Asians) reached out. People who had lost years ago but had never spoken about it, people who were going through a loss then. It really surprised me how many didn't know about monitoring your baby's movements or the importance of taking vitamins and attending all antenatal appointments.
“When I asked them if they knew that Asians are more at risk of loss, not one person did. As Asians, we are more at risk of losing a baby than a white person. That stat and risk need to be communicated to expectant mothers in a way to make them more aware of their baby and monitor their baby with a clear message telling them to seek medical advice if anything seems wrong. We warn expectant mothers of so many other risks - we should be educating them on this too.”
Sands Ambassador, a bereaved mother speaks
Shetal Ksavi Joshi, Sands Ambassador and Babyloss Speaker admits that she wasn’t well informed of the risk of miscarriage. Speaking to the newsweekly about stillbirth and baby loss, Joshi said, “Having had a premature baby first time and second, I was in the unknown and had to find our way through. The neonatal nurses were incredibly supportive in the process of our first two sons being born prematurely, and it was only then that neonatal death crossed our minds, especially with our second son Shivai, because he had complications and we had almost lost him twice after he was born. We just didn’t expect he would die after being home for nearly 8 months and suddenly dying the way he did.”
Shetal had 3 miscarriages after her first son was born. “We desperately tried to have a second child, Shivai was our second born, and he was prematurely born at 29 weeks. We almost lost him the first night and then again 4 weeks later. He was revived and stabilised.
“He was home and developing well. Just before his 8-month birthday, he caught a cough and cold. I had 2 routine paediatric and dietitian appointments for him where I asked them to check him and continued to pursue 3 additional GP appointments where they all checked his chest and said he was fine, nothing to worry about.
“The day he was showing some progress, he died, in the GPs surgery, 39 seconds from home. He was fine when we put him in his car seat and when we took him out, he was limp. 45 minutes later he was pronounced dead,” Shetal Joshi told Asian Voice.
Shetal feels that medical help was available but the viral bacterial bug that caused an attack on Shivai’s immunity, and which ultimately caused pneumonia and sepsis was not picked up before, nor was he tested for it, until it was discovered after he died.
Describing the kind of mental health support she had, Shetal said, “Sands, who I am an ambassador for, really helped our family. We found comfort in the arms of them and others who had been through similarities like us.” She also received post-natal therapy from her GP.
Does this experience change a woman’s body beyond the mental trauma that it leaves behind? Shetal said, “It changes your whole life, you are never the same person again. Mentally, physically, emotionally it affects every part of your day-to-day life. There’s not a second, I don’t think about Shivai and our miscarriages. What would our future be like with him in it? What personality would he have, how would the dynamics work with him around and our other children, his milestones if he was still alive?
“I always feel like I am two steps, and then one step back, grief can hold you back in unparalleled ways and the trauma from it.”
Shetal emphasises that expecting parents must speak to their GP and maternity care unit if they have any concerns and ask for the answers they seek.
“As an ambassador, I do much work to support and help Sands. There’s a great deal of support out there, and please, no one should feel alone,” Shetal Joshi said.
Sands is here to support anyone affected by the death of a baby. Sands’ free Helpline is available on 0808 164 3332 10am to 3pm Monday to Friday and 6-9pm Tuesday and Thursday evenings. You can also email [email protected] for support. www.sands.org.uk/support
