Women who’ve endured ’emotionally catastrophic’ trauma of baby loss say it’s the one grief people STILL don’t talk about – and reveal their anger that support for parents ‘remains a postcode lottery’
- WARNING GRAPHIC CONTENT: The UK continues to have one of the highest rates of stillbirths in the UK, with more than 2500 babies stillborn every year
- Femail spoke to three mothers who’ve experienced the trauma of losing a baby
- Natalie Casey, 41, from Warwickshire, says losing twins Daisy and Georgie in 2016 at 25 weeks ‘tore her family’s lives apart’
- Ritu Sharma, 50, lost three babies at 20 weeks, 27 weeks and had a stillbirth close to full-term, which left her suffering flashbacks and diagnosed with PTSD
The taboo surrounding baby loss is gradually being eroded, with celebrities speaking publicly about miscarriage, stillbirth and bereavement, with high profile figures such as Chrissy Teigein and Meghan Markle sharing their losses.
But despite the increased awareness, experts that that stigma in society still exists around the loss of a pregnancy or the death of a baby – with people still often not wanting to talk about it, or not knowing how to talk about it, with those who are grieving.
Around 2,500 babies are stillborn every year in the UK – one of the higher rates of stillbirth in Europe, with around 2,100 babies lost in the early weeks of life.
Recent research carried out by UK charity Tommy’s, published in health journal The Lancet, found that the trauma of losing a baby to miscarriage, defined in the UK as a loss of pregnancy before 24 weeks, significantly increases the risk of both suicide and depression in men and women.
Tommy’s Chief Executive Jane Brewin told FEMAIL that losing a baby at any stage in pregnancy is ‘one of the most devastating experiences that any family can go through.’
‘The taboo around baby loss can lead to isolation for people already struggling with unimaginable grief, and the common attitude that it’s just “one of those things” contributes to a failure to bring about change,’ she said.
‘Breaking the silence is a vital step in supporting bereaved parents, while our researchers continue working tirelessly to find ways of sparing others this heartbreak and making pregnancy safer for all.’
Heartbreaking: Chrissy Teigen publicly shared the loss of her son Jack last year and discussed her regret at not looking at his face because she was too scared to see him ‘in her nightmares’ (pictured with Jack in September 2020)
‘I had to keep explaining what had happened to my lost twin – one GP asked ‘Where’s the other one?’
Sarah McDermid, 28, from Kent, lost her twin son Gabriel in the womb at 29 weeks. She had to continue to carry him to try and ensure the safety of her other twin, Jackson, now two-and-and-half. A single parent, she has another son, Theodore, four.
‘When I held Gabriel, he just looked like he was sleeping. My mum was amazing; she took him from the midwife and held him until I could. My placenta was calcified and failing, so my other son Jackson was being treated immediately and so was I.’
‘They whisked Jackson off to the Special Care Unit but I asked for a photo of my sons together first – they were identical twins – and we laid them next to each other.’
Sarah, a hairdresser from Kent, was told at 26 weeks that her twin sons, Gabriel and Jackson, were in grave danger, with just a 10 per cent chance of survival
Sarah, a hairdresser, says the later stages of her pregnancy were fraught with fear after a scan at 26 weeks revealed that her babies had developed twin-to-twin transfusion, a rare disease that happens when developing foetuses don’t share the placenta equally.
‘They were both very, very sick. Jackson was getting too much of everything from the placenta and Gabriel wasn’t getting enough. We were told Jackson’s brain wasn’t coping and Gabriel was struggling – at that point they had a 10 per cent survival rate.’
After undergoing difficult surgery at King’s College Hospital, London, to split the placenta, a follow-up MRI scan found both babies had brain damage, and Gabriel’s life was now in grave danger.
Sarah says: ‘You go into auto-pilot, I didn’t have a lot of time to think about it – the hospital started preparing me to lose both of my babies or them to be severely disabled with no quality of life.’
The memory garden that Sarah visits to remember Gabriel; doctors told her that by curling up in a ball when he died in the womb, he helped save the life of his brother Jackson
Sarah with Jackson, now two-and-a-half, and her older son Theodore visiting the memory garden for Gabriel
HOW CAN SURGERY HELP TWIN-TO-TWIN TRANSFUSION SYNDROME?
In complicated cases of twin-to-twin transfusion syndrome (TTTS), surgery can offer the best chance of having two healthy babies.
Laser ablation surgery delivers laser energy that seals off blood vessels on the surface of the shared placenta that is allowing for blood flow to be shared.
Because the vascular connections between the two fetuses are sealed, no further blood exchange between the foetuses takes place.
Most surgeries are performed under local anaesthesia. A small incision (3mm) will be made and a trocar (small metal tube) will be inserted into the amniotic sac of the recipient twin.
An endoscope (medical telescope) will be passed into the uterus. The blood vessels, which are visible on the surface of the placenta, will be analysed, and all communicating vessels will be sealed off with laser energy.
The excess amniotic fluid may be drained from the sac of the recipient twin.
Pregnancy outcomes after laser therapy for TTTS is as follows: approximately 85 per cent of patients will have at least one foetus survive, 50 per cent will have both survive, with a five per cent risk of a disorder of the nervous system such as cerebral palsy.
Source: Fetal Health Foundation
At 29 weeks, she felt a strong movement in her stomach and two days later a scan revealed that Gabriel had died.
‘It was almost like an out-of-body experience. The hospital staff moved the screen away from myself and my husband at the time. I knew. I broke down. It was really, really hard.
‘Gabriel had curled himself up in a ball and passed away. The consultant said later that the fact he’d done that gave Jackson more space, and suggested his twin was his guardian angel – that’s where we got his name from.’
Doctors told Sarah she’d have to carry her twins for as long as possible to ensure Jackson had the best chance of survival, something she found harrowing.
She says: ‘I could feel Gabriel inside me – it was a very hard thing to get my head around.’
At 31 weeks, Sarah went into labour, Jackson was not coping so an emergency caesarean section went ahead but no bereavement midwife was present due to staff shortages.
‘My mum, Julie, dressed Gabriel and spent time with him, taking hundreds of photos of him – even of every finger – something which I’ll be forever grateful for. He had his nanny when I wasn’t able- the photos are hard to look at but they’re also so precious.’
Jackson weighed 4lbs at birth and, now aged two-and-a-half, has continued to thrive and develop as a normal toddler would despite fears he would have many disabilities and may not be able to walk.
‘To have a baby is the most wonderful feeling in the world and I was completely overjoyed to have Jackson but completely heartbroken at the same time. You’re faced with emotions at the complete opposite ends of the spectrum. I didn’t know how to be.’
She says poor communication between NHS staff often meant she had to keep repeating her story in the weeks that followed Gabriel’s death, something which heightened the trauma.
‘I felt like I needed a neon sign above my head to make it clear what had happened.
Despite fears that Jackson would have disabilities, he’s currently a thriving two-and-a-half year old, says his mum
Sarah in the memory garden for Gabriel with Jackson (pictured second from left, and Theodore, left), She told FEMAIL: ‘You’re faced with emotions at the complete opposite ends of the spectrum. I didn’t know how to be.’
‘At Jackson’s six-week check, a GP asked “where’s your other one?” I shouldn’t have had to explain. The mental health impact is huge – you can’t even imagine how that feels.’
Professor Ranjit Akolekar, Consultant in Fetal Medicine and Obstetrics at Medway NHS Foundation Trust told FEMAIL: ‘We offer our deepest sympathies to Sarah and her family and we have made contact with her directly to talk about her experience.’
‘Losing our girls was catastrophic, we just never expected it to happen to us’
Natalie Casey, (pictured) 41, from Warwickshire, told Femail that the impact of losing her twin girls, Daisy and Georgie, in 2016 at 25 weeks had been ‘catastrophic’
Natalie Casey, 41, and husband Sean, 45, from Warwickshire, lost their twin daughters, Daisy and Georgie, on December 4th 2016 after Natalie went into premature labour at 25 weeks. Natalie says the support offered to bereaved parents in the UK remains a postcode lottery…
‘I’ve said to Sean many times that I don’t think I would have been able to go on after we lost Daisy and Georgie if I hadn’t had to care for our son, Jack, who was just six at the time. Losing them was catastrophic, it just ripped our world apart.’
Natalie, who works as a bid management head, says the family, which also includes Sean’s older son, Nathan, 18, has endured ‘so much grief and sadness’ since the deaths of Daisy and Georgie and they are still coming to terms with the loss, four years on.
Natalie’s twins were born alive but weighed little more than a 1lb each. They had short lives and tragically passed away after just a day. They were cared for at different hospitals and both girls died in their parents’ arms.
Natalie tells FEMAIL: ‘I’m an organised person and we’d prepared for the girls, buying things for their nursery; everyone had been so happy for us and we just never expected something like that to happen. We’re still mourning the lives they would have lived; they would have been starting school this September.’
Alongside life-changing grief, guilt reared its head too, says Natalie. ‘There was an overwhelming sense of guilt – that my body hadn’t been able to carry my girls safely to life. It was horrific.’
Alongside the pain of losing the twins, the grief was compounded by having to explain to people what happened in the weeks afterwards, both in person and on social media.
Natalie recalls a difficult encounter where a lady, unaware of what had happened, asked to see her bump at her son’s swimming class. ‘I just opened my coat to her and said “I’ve lost them”‘.
On March 10th 2019, Natalie and her husband Sean welcomed a daughter, Livvie, after enduring two further miscarriages following the deaths of their daughters in 2016
Natalie, who’s now a trustee for The Lily Mae Foundation, which supports parents who’ve lost babies, says because her daughters died at different hospitals, she witnessed first hand the huge disparity in support offered to parents affected by the death of a baby in the UK.
‘I experienced two levels of care. At one hospital, I was supported by a bereavement midwife, who was absolutely wonderful and helped us to organise a funeral for Daisy and Georgie, which was far beyond her responsibilities. At the other hospital, the bereavement care was very poor and I was just left. I would have had to contact my GP for support; there was just nothing offered to me at all, which is a terrifying thought.’
The trauma of losing the twins was further heightened by two miscarriages, which put huge strain on the couple’s relationship as they questioned if they had the emotional strength to go on trying for more children.
‘We’re still mourning the lives they would have lived’ Natalie, pictured with Sean and Livvie, say they strive to keep the memory of Daisy and Georgie strong
Bittersweet: Natalie says safely delivering Livvie was ‘wonderful’ but adds that as a grieving parent ‘you can’t help but think of the babies you’ve lost’ (Dad Sean with Livvie, son Jack and Natalie’s step-son Nathan)
The family pictured on holiday: Natalie says they have photos of Daisy and Georgie in the house to remember the girls and admits the ‘there will always be a hole in our hearts’
Eventually, they were referred to Professor Siobhan Quenby at University Hospitals Coventry & Warwickshire via the charity Tommy’s. Natalie says: ‘She told us: “I will do everything I can to make sure you safely have a baby” and almost a year to the day after that Livvie was born.’
Giving birth to her daughter, now two, on March 10th 2019, was ‘absolutely incredible but also bittersweet’, she says. ‘You have this wonderful baby in your arms and there’s so much love but you can’t help but think of the babies you’ve lost.’
The ‘rawness’ of grief that came in the hours, days and months following Daisy and Georgie’s deaths has faded, says Natalie, but she adds: ‘The pain will never heal, there will always be a hole in our hearts.
‘We have two photos of the girls in the house and Livvie points at them and says ‘baby sisters’ – she obviously doesn’t understand yet, but we try to talk about the girls in our daily lives to keep their memory alive.’
For help and support on the loss of a pregnancy or baby, visit www.tommys.org. The charity has bereavement-trained midwives available on (freephone) 0800 0147 800 from 9am to 5pm weekdays.
‘The day I lost my third baby, I died too. I fled the hospital and wanted to scream my pain from the rooftops…’
Ritu Sharma, 50, from Birmingham, lost her first baby Ram, in 1994, at 27 weeks, and her second, Nina, at 20 weeks in 1995. After spending six months in hospital, she delivered her son, now in his 20s, but in 2004, her son Suraj was stillborn…
‘You can see posters in a doctor’s surgery about strokes or heart attacks but you don’t see anything relating to pregnancy loss – it’s almost like we’re still too afraid to mention it. Why? 14 babies a day are die in the UK before, during or soon after birth.’
Ritu’s first pregnancy came in her early twenties after she’d been married to husband for a couple of years. It was difficult from the outset and she was diagnosed with severe hyperemesis (morning sickness) and found herself in and out of hospital.
At around 27 weeks, Ritu started bleeding and, after calling an ambulance, was told by hospital staff that she was going into labour. Her son, Ram, was born alive and transferred to a different hospital but died seven hours later.
Ritu pictured in 1995 during her second pregnancy, with her daughter Nina, who was delivered at 20 weeks and lived for just 20 minutes. Ritu says she ‘boxed in her emotions’ after losing Nina, and her son Ram, who was born alive at 27 weeks but died seven hours later
The grief left her ‘numb’ and she ‘boxed in my emotions’ and tried to return to normal life, only to fall pregnant again just six weeks later. Her second child, Nina, was born at 20 weeks and lived for just 20 minutes, leaving her ‘floored’.
‘I felt anger towards the consultants. How could this have happened again? Eventually, I was diagnosed, years later, with an incompetent cervix – but I had to lose two babies for them to work that out. I bottled up my grief – I felt like I had no control of what happened to me and didn’t know how to move forward. I felt like a failure.’
She delivered a healthy son in the late 1990s, but had to spend a gruelling six months in hospital – with a stitch in her cervix – while doctors monitored the pregnancy.
Ritu says she felt ‘lost’ because previous pregnancies had not made it that far: ‘Grounding yourself can be very difficult because you never thought this day would happen.’
When her son finally arrived, the bonding process was complicated after such a difficult pregnancy.
‘I asked my midwife, “has he got ten fingers and ten toes?” and then I just let my husband hold him. I felt like my job was to deliver him and, because I’d become so used to loss, I struggled to know what my job was after that.’
In the early 2000s, Ritu suffered an early miscarriage before falling pregnant again with Suraj two years later. Again she required a stitch, which was later taken out as the pregnancy progressed well.
It was a few days before Ritu was due to give birth when tragedy struck. Her close family were visiting and were staying with herself and her husband.
She explains: ‘It was a Friday night and I asked my husband to take me into hospital for a check – I just didn’t feel right and I hadn’t felt Suraj move much that day. They scanned me but I knew. I’d had a scan two days earlier and everything was fine. When I looked at the scan, I just knew.’
Ritu, who has a grown up son in his twenties, says she ‘died’ the day she lost her son Suraj, who was stillborn and ended up being diagnosed with PTSD by her GP. She eventually contacted the charity Sands for help and is now a volunteer at the Birmingham branch (Ritu pictured in 2020)
A second doctor came in and confirmed to Ritu there was no heartbeat. She says: ‘I died that day. The Ritu that was holding on for all those pregnancies, who tried and tried and tried, she died that day.’
When doctors told her she would have to deliver the baby that night, Ritu says she was consumed by anger at losing her son that she fled the hospital, telling staff that she would return in the morning.
‘I wanted to go to the top of the rooftops and scream. Even when I got home and was telling my mum what had happened, it didn’t feel real. I didn’t sleep all night.’
She gave birth on the Saturday and on the Monday the consultants came to see her. ‘Suraj was the spitting image of his older brother. The doctor just looked at me and he had tears in his eyes. He was crying. They had no clue how it had happened. It was like God was saying “you’ve had a premature birth, you’ve had a miscarriage but you haven’t had a stillbirth yet. I just thought “Why me?”‘
Ritu says she tried again to ‘box in’ her grief but she couldn’t. After she started getting flashbacks weeks later, her GP diagnosed her with PTSD and wanted to put her on her anti-depressants, which she refused but then made her realise she needed more help and decided to contact baby bereavement support charity, Sands, instead and started attending monthly sessions.
‘I realised I’d been going round for years dodging grief – you can’t go around it – you have to go through it and I needed help to do that.’
‘I felt lonely. My husband and friends were lovely but they couldn’t give me what I needed. Society expects you to just get on with it. I didn’t want to be a nuisance. People don’t know what to say and some stopped ringing.’
She says some people told her: ‘Don’t worry you can adopt’ which she found unhelpful.
Now 50, Ritu volunteers as a trained Befriender with Birmingham Sands, helping to support other bereaved parents through their loss and is particularly focused on helping the South Asian community reach out for help.
‘When you lose a parent, you can talk about your mum or your dad and everyone can join in. Suraj, Ram and Nina were my babies but if I start talking about them beyond my family and friends, it can still feel like I’m not allowed to. I want every woman to feel comfortable enough to talk about the babies they’ve lost.’
The charity Sands supports 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]
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