When a rainbow graces the sky, six-year-old Dylan Pritchard believes it to be her big sister, who was born sleeping, looking down on her to say hello.
Two years ago, Dylan’s parents, Jen and Len, gently told her about Elliot – the baby girl whose heart stopped beating before birth.
Jen had miscarried four times before conceiving Elliot – a longed for baby who, after a 20-week scan, was diagnosed with congenital diaphragmatic hernia (CDH).
The condition occurs when a gap forms in the diaphragm during development of the foetus in the womb, with the bowel, stomach or even liver traveling into the chest cavity.
Then living in Aberdeen, the couple made regular trips to CDH specialists in Glasgow who carried out tests to establish the size of the hole in the diaphragm and any other complications that can present with the condition, including Down Syndrome.
“On a percentage scale, it was not great,” Jen told Lanarkshire Live. “They offered us a termination, but we didn’t even consider it.
"We could not give up on her and how far we had come with her.”
Medics told the couple that their baby would spend the first year of her life in hospital and would need gruelling surgery as she grew.
A week after her 34-week scan, Jen realised that she hadn’t detected any movement from her baby. On arrival at hospital, doctors couldn’t find a heartbeat. A scan revealed that in the space of a week, the infant’s stomach had travelled into the chest cavity, putting pressure on the heart.
After a 12-hour labour, the couple’s daughter was stillborn on April 26, 2014. After spending a day of family time with her, they returned home with shattered dreams, dashed hopes – and only the teddy they named Rubi after the Rubislaw Ward in which their baby girl was born.
A post mortem was to reveal that as well as CDH – which arises in approximately one in 2500 births and accounts for around eight per cent of all major congenital abnormalities – Elliot had an under-developed lung and only one tube from her bowel and bladder meaning that, had she survived, she would have been on a catheter for life.
“The consultant was amazing,” said 41-year-old Jen. “She told us that Elliot had made the decision that it was too big a fight for everybody.”
As was the case with each miscarriage, when Jen left hospital after delivering Elliot, there was no support. And even although she had been through labour and a natural birth, she wasn’t even offered the routine six-week check-up afforded to all new mums.
Jen was aware of stillbirth and neonatal death charities like SANDS and Panda – and even CDH has its own support group. But she didn’t reach out to any of them.
“I didn’t want to dwell on the grief and be consumed by it. I pushed everything down. I wore a mask and pretended I was okay,” said Jen, who now lives with her family in Cambuslang.
“The way things are in society, if you have a miscarriage or a stillbirth, people will say sorry for your loss and, in the same breath, ask if you’d like to go to the pub.
"You become a mum as soon as you fall pregnant. You have lost your world, your dreams and everything you were hoping for. When it comes to a stillborn, people don’t know how to speak to you.
"It is the loss, the experience. But over time, babies get forgotten. It is in the past. It’s forgotten about and doesn’t matter. It becomes matter of fact. But it’s our child, it is our baby.”
Broken by the heartache of losing Elliot, Jen and husband Len decided to stop trying for a family. The pain was too much to bear.
“If you try, you are always going to have that fear, that worry,” she explained.
“We decided not to put pressure on ourselves. Then, three months later, I fell pregnant with our little Dylan, our rainbow.”
Her pregnancy was defined more by worry than excitement, with Jen refusing to attend medical appointments without her husband by her side.
Then, a week before Elliot’s first birthday, Dylan was born weighing in at a healthy 7lbs 5oz.
“The first thing she did was grab her daddy’s finger. It was amazing,” said Jen.
“The first six months were heaven. Our whole world was consumed by her. But after six months, I hit rock bottom with post traumatic stress and post natal depression.
"I’d be playing with Dylan on the floor, then I’d think, ‘why am I sitting here happily playing with my daughter when I’ve lost a daughter?’"
Anything could act as a trigger for Jen’s grief – from the song that was playing in the early pregnancy unit when Elliot was born, to another woman announcing her pregnancy.
“You feel you have to protect people when they ask how many kids you have. Then, you feel guilty for not honouring the child you’ve lost,” she said.
“I tried counselling, but the ones I saw didn’t understand. I was going in and talking about it, but not getting to the root of anything. I could not make decisions.
"Everyone thought I was fine. The only one who could see it was Len. I was putting everything on him, and I felt guilty for it.
"I was not living life. I was existing. I lived in a bubble and Len was at the front of it. If I was in my bubble and nothing burst it, I was fine.
"It was a very difficult few years.”
Throughout, Jen was determined that Elliot, and the babies she’d miscarried, wouldn’t be resigned to the past.
“After Elliot was born, I wanted everything we had been through to have a purpose. I wanted a legacy. Something was going to come of this. I was not going to become just another statistic,” she explained.
Jen, who had previously trained as a counsellor for families whose babies and young children struggled with sleep, embarked on 18 months of study into how birth trauma can have a lasting effect on mothers and their babies, and how mums’ experiences as far back as their own childhood can present challenges when they become a parent.
Former police officer Jen set up her business, Mum’s Healing Mentor , and discovered that the journey had helped her to unravel the root of her own torment and mental health struggles.
Although she experienced a sixth miscarriage after the birth of Dylan, Jen is now eight months pregnant with a baby brother or sister for their little girl.
She has been attending scans and consultants’ appointments on her own, and describes herself as much more relaxed, more confident, calm and in control. And Dylan, who sleeps every night with Elliot’s teddy, Rubi, couldn’t be more excited.
“Everyone thinks birth trauma is an emergency, the pressing of alarm buttons when everything goes wrong,” said Jen.
“Every person experiences trauma, and no two are the same. But there is nobody there to help you through that. It doesn’t matter if you’ve had one miscarriage or stillbirth, or 10. It is the worst club in the world to be in.”
It’s been 45 years since Jen’s own mother had a stillborn baby at six months and - she laments - society’s attitude to the loss of a pregnancy or baby has not since evolved.
There is, she says, still no support, no understanding for women who experience such devastating loss.
As a couple who left hospital without their baby girl and had to pass excited new mums and dads carrying balloons and baby carriers, Jen and Len are fiercely supportive of the commitment made by the Scottish Government and NHS Lanarkshire to make dedicated facilities available to women who experience unexpected pregnancy complications.
Jen continued: “The midwife who delivered Elliot was absolutely wonderful, and went on to become a bereavement counsellor. But there are midwives and consultants who are dismissive of what a mum is going through.
"Maybe their hands are tied, or they just don’t have the time. Regardless of whether women want support or not, they should be given the choice.”
The Scottish Government and NHS Lanarkshire have pledged that dedicated facilities in maternity units for women like Jen who experience miscarriage or stillbirth will be introduced by the end of next year.
It follows a campaign mounted by Lanarkshire mum Louise Caldwell, who had to endure the heartache of delivering her stillborn baby in a labour ward in 2019 after a 12-week scan revealed that the little one she was carrying didn’t have a heartbeat.
Louise, of East Kilbride, was instrumental in bringing about change after her petition attracted more than 28,000 signatures.
Both the Scottish Government and NHS Lanarkshire have confirmed that they are working towards dedicated miscarriage facilities and signposting mums to the correct services.
The pledge came after Dr Lisa Cameron, MP for East Kilbride, Strathaven and Lesmahagow, tabled an Early Day Motion in the House of Commons that paid tribute to Louise for campaigning on behalf of mothers who have miscarried.
The motion, which called on the implementation of alternative maternity wards to ensure they receive the best care and support possible, is one of the many ways Lisa – who herself had two miscarriages between 2009 and 2012 – has campaigned for improved services for women who experience pregnancy complications.
NHS Lanarkshire chief midwife, Cheryl Clark, said the health board aims to finalise a dedicated unit for women and their families by the end of the year in recognition of the importance of privacy and grieving in a quiet and protected, sound-proofed space at Wishaw General.
She said: “We recognise what a difficult time it is for a patient experiencing miscarriage.
"They will be taken directly to our Early Pregnancy Assessment Service (EPAS) for immediate assessment from the midwife.
"The midwife conducts an initial assessment of physical observations, pain and bleeding in order to make a plan of care.
"An immediate plan of care is made which can range from conducting an ultrasound, taking bloods, siting a cannula to replace fluid lost, pain management or referring to a consultant obstetrician for a plan of care.
"The midwives will provide support and counselling to any woman who has suffered an early pregnancy loss. For women who have had multiple losses, psychological counselling is offered.
“If medical management of miscarriage is required, this is conducted by the midwives in EPAS and our bereavement suite is housed next door if this is required by the patient. For women whose babies are stillborn, they will deliver in labour ward in a single room where privacy is facilitated.
"Transfer to our Ohana suite, our dedicated bereavement suite, is facilitated if required.
“We also have a dedicated maternity and neonatal psychological intervention team of psychologists and mental health counsellor who can provide psychological support in the following days and months for families who have experienced a loss.
In addition, the bereavement specialist midwife provides follow up calls and care to women and their families who have suffered a stillbirth.”
A Scottish Government spokeswoman said: “The loss of a baby, no matter at what stage of pregnancy, is a significant and traumatic event.
“We are committed to establishing a dignified, compassionate miscarriage service tailored to the needs of women as set out in the Programme for Government 2021/2022 by the end of 2023.
"The aim is to support the development of individualised care plans after a woman’s first miscarriage and ensure women’s services have dedicated facilities for women who are experiencing unexpected pregnancy complications.”
For more information about Jen’s work, visit Mum’s Healing Mentor on Facebook.
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