‘This will mean so much to the parents of Northern Ireland’ | UK News

Women who lost pregnancies before 24 weeks have said a baby loss certificate will be a “powerful symbol of validation for the grief that parents are going through”.

Currently in Northern Ireland, the death of a baby after 24 weeks is officially recorded as a stillbirth but there is no formal recognition of loss before 24 weeks, as there is in England.

The finance minister has said it is his intention to introduce a similar scheme in Northern Ireland before the end of the year and a public consultation seeking views from bereaved parents has received more than 540 responses.

He is keen to hear from as many people as possible, before it closes in September.

This article contains themes and images of baby loss, which some people may find distressing.

News NI has spoken to three bereaved women about their experiences.

Selina Casey, from Kilrea in County Londonderry, was prompted to set up the White Butterfly Foundation to help other parents when she found support was lacking after her own loss.

Selina’s story starts in February 2021, when she was pregnant with her third child.

She arrived to an appointment at 18 weeks, “just assuming everything would be grand”, but was told her baby had no heartbeat.

“I was told: ‘You’re going to have to take medication and come in and deliver your son’,” she said.

Three days later, she delivered her son after a 12-hour labour at the Causeway Hospital.

“I left the hospital the next day with him and a leaflet,” she added.

Her charity was set up “for bereaved parents, by bereaved parents”.

“I remember leaving the hospital and feeling like I had nothing to remember my child,” she said.

She said her child has a grave but she has “no certificate for him and nothing else to say that he was here”.

“These certificates are going to mean so much to the parents of Northern Ireland,” she added.

“Not that we ever want to have a hierarchy of grief, but there are different feelings that come at different stages of pregnancy loss. At the earlier stages, prior to 24 weeks, there can be feelings of invalidation, feelings of: ‘I don’t have a right to grieve here’.

“Parents can feel silenced.”

She always tells families: “Please don’t stop talking. We always want to talk about our baby and call them by their name if they have been named.”

Since the foundation opened, there have been referrals every day from health trusts and those self-referring.

While she wishes the certificates had been brought in sooner, it’s a “massively positive step forward” and, hopefully, a “stepping stone” to more support rolled out in all trust areas.

Leah O’Hara “100% welcomes the certificates” but agrees that they are just one step in getting more support and legal recognition.

The nurse, from Bangor in County Down, lives with her husband James and daughter, eight-year-old Mylah.

After three early pregnancy losses, last year she and James lost baby Jacob at 22 weeks.

“He was born, I gave birth to him and there was nothing to recognise that he existed – he was a baby – but he was born two weeks before the cut off,” she told News NI.

The family was able to bring him home for five days.

“The lack of recognition impacts your grief. I had so much anger that our baby was not recognised. You just want their name and story told.

“The only certificate we have for Jacob is a cremation certificate.”

Leah hopes the certificate will be a step towards the issue being more openly spoken about.

“Sometimes such losses are overlooked because people haven’t met the baby or know the baby – but you know the baby.

“It’s a much longed for, loved baby already.”

Chatting to other mums in a group set up by Lurgan-based charity Little Forget Me Nots Trust has helped.

“Speaking to people who resonate with me and just know exactly how you feel has been amazing,” she said.

Mylah has benefitted from their programme for siblings.

“She was struggling with the fact that everyone in school had brothers and sisters and she didn’t know how to mention her brother.”

Louise Taylor, from Portadown in County Armagh, founded the charity and said the certificate scheme is “so needed”.

She said goodbye to her son, Ruben, 10 years ago, and while there was support, it was not the support she felt she needed.

“Everything was so dark and so gloomy,” she said.

“I really needed to help to figure out a way to find the light again.

“I had another little girl at home and I struggled to parent her. I was back at work, completely oblivious that the grief was consuming me.”

Now she’s “using this darkness” to help other families.

Five years ago, when her father asked her to take over the family funeral directing business, she wanted to incorporate charity support.

“I couldn’t process saying goodbye to a child and helping a parent say goodbye to the child, then letting them off into the community,” she said.

“When somebody comes in through the door, after we’ve helped them say goodbye, in a few months through the darkness we pass on the baton to the charity so that the family is not left in the wilderness with nowhere to go.”

The programmes are “parent-led, trauma-informed and support these mummies and daddies in the darkness”.

One such group is for mums, using crafts, which keep hands busy while “blending it in with an element of understanding how our brain is processing this”.

“The most important thing is to let them know that it’s OK if they feel like this and other people around this table feel like this.”

Her team hopes to roll out a similar group for fathers.

Louise said 10 years ago she would have loved a certificate.

“This is about validating the grief of these mummies and daddies – putting it in stone that this wee person existed,” she said.

“I don’t think people realise what a woman goes through to say goodbye to her baby.”

In England, there are plans for parents who experience a miscarriage before 24 weeks of pregnancy to be entitled to bereavement leave.

The women said they would like to see similar coming into Northern Ireland.

“I spoke recently to a woman who has had multiple miscarriages and she was asked to provide medical evidence of that,” Selina said.

Leah has been off work since the heartbreak of losing baby Jacob.

“If Jacob had been born two weeks later I would have been entitled to maternity leave,” she said.

She would also like help for self-employed parents, like her husband.

The women would also support the certificate scheme being applied retrospectively.

Leah said she would get four certificates.

“We didn’t name our other babies – as they were before 12 weeks but a loss is a loss.

“I think back dating it would help a lot of families.”

The scheme will be open to parents who have experienced the loss of a baby in the first 24 weeks of pregnancy.

The consultation runs until 12 September.