'The pain of stillbirth stays with you forever'
A new support group formed by a group of seven affected parents helps those bereaved by neonatal death,
CHRISTMAS can be tough at the best of times, but it is particularly difficult for parents who have lost a baby. As other families prepare for Santa Claus, they are reminded of their loss and can struggle to see the joy and wonder of the season.
December 1 marks the fifth anniversary of a carol service for bereaved parents. Held in St Joseph's Church, Cork, at 4pm, the candle-lighting ceremony allows those who have lost a child – through stillbirth or neonatal death – a chance to mourn and honour their child with others who have suffered similarly.
It was the opening salvo of what was to become Feileacain – the Stillbirth and Neonatal Death Association of Ireland, which provides support to anyone affected by the death of a baby during pregnancy or shortly after.
According to the most recent statistics, there were 273 stillbirths in Ireland in 2010, 195 neonatal deaths and a further 76 deaths of infants between four weeks and one year. Some 544 families were devastated by infant death. That doesn't include the siblings, extended family and wider circle of friends. Feileacain aims to help all those affected.
When Liz and Brian Roache lost their conjoined twins, Ellen and Lucy, when they were just 35 minutes old, the care they received at the hospital helped ease the pain. "They were brilliant," Brian tells me. "Really fantastic. But after we were discharged, there wasn't anyone to help us through the grief." There were friends and family, but no one who really understood what they were going through.
Helen Hayes, who miscarried her daughter Roisin in 2003, had sleepless nights. "It's very isolating," she says. "With no one to turn to, you don't know if what you are feeling is normal.
"You don't know if you should be allowed grieve or if you should just move on like everyone is telling you to. I thought, 'when I'm stronger, I want to help other people who are going through this'. To tell them 'your baby did matter. It was here and it's okay. I made it through and you are going to make it as well'."
Meeting via the internet or through friends, she, Liz and Brian and five other parents just like them, formed Feileacain, a not-for-profit organisation run entirely by volunteers who have experienced the loss of a child.
Marie Creegan lost her daughter the day before she was due. "She died on a Sunday and every Sunday for three months after I suffered PTSD. I was in bits reliving her very painful birth. People wouldn't talk to me about my loss because they thought they would make it worse."
As a mental health social worker, she knew what was available internationally. "The appropriate support wasn't here. So I thought we would go and provide it."
In four years, Feileacain has made great strides easing this suffering for other bereaved parents. It started by having memory boxes installed in every hospital in the country so parents can have mementoes of their brief time with their baby. 800 were distributed in 2013.
Each had two teddies (one for the parents and one for the baby), a box to keep locks of hair, ID bracelets, a finger and a foot printing kit, plus a hand-knitted blanket.
"We discovered many bereaved parents didn't have any memories of their dead baby," says Brian.
"One lady had the receipt for the coffin her child was buried in and that's it. How sad is that?"
After the boxes went into hospitals, parents started coming to Feileacain for help and support.
The couples man a helpline, offer low-cost counselling and provide sticker alerts for doctors who can avoid asking painful and repetitious questions regarding past pregnancies during future ones. While they initially maxed out their credit cards getting the organisation on its feet, families and friends of the bereaved now run tea mornings, marathons, whatever they can, to raise the €25k it takes to run the charity. While things are getting better, parents are still expected to just 'get over' the loss of their child.
"People would say, 'sure it's been three weeks'," says Jacinta Murphy.
'They don't realise it stays with you for the rest of your life. You still mark what would have been their birthday, their Communion, their Conformation and their first day of school." She lost her daughter in 2000. "When you come home, you want to tell your story over and over again. You have a broken heart and empty arms."
"That even comes from professionals," says Marie. "They say things like, 'What's wrong with you? Sure you're pregnant again, you can forget about that other one'.
"We want them to up their game. Five minutes of good care will impact the family forever. But five minutes of bad care will impact them just as much. Stay away from platitudes," says Helen.
"'You have an angel in heaven,' 'you are young, you can have another one,' 'at least it wasn't an older child,' I found the best thing to say was, 'I'm so sorry, I don't know what to say to you'."
Practical things make all the difference. "Making dinners, collecting my daughter from school, those kind of things that still have to be done but you don't have the mind or the energy for it. Take someone out for a tea or coffee, bring them over some cakes. Just be there for them instead of crossing the road when you see them coming."
Many of the calls to their helpline concern such issues. "People want to know what to say when people want you to go to an event where there is a small baby, or pressure you to go back to work, get out of bed, whatever it is. When they attend the support group, they can see that it is not just their mother or doctor who is bent like that."
Support groups are also a great venue for men to express their grief. "You think, 'I have to look after her'," Brian says. "And if there's kids there, you have to look after them. "
"Men suffer as much as the women," Jacinta agrees. "At the meetings, they all say that, 'people ask how Mary is but they don't ask how I am. It's like it never happened.' It's deeply painful for them and it's important for them to hear that other fathers feel the same way."
Watching the current generation mourning has helped older parents come to terms with their own loss.
"Grandparents who wouldn't have been allowed grieve the passing of their baby – who were told to get on with it and not mention it again, they see parents spending time with the baby now," says Marie.
"They see that it's okay to mourn and go away themselves to try and find where their babies were buried."
Feileacain can help them do that.
"Sometimes, if it happened before the 1950s, there are no records and we might not be able to locate the grave. But we help them work around that, naming the baby and that sort of thing."
Bereaved mothers often get involved with Feileacain's Cocooned project, knitting the blankets and crocheting the burial gowns supplied with the memory box.
"What you find is an awful lot of women who would have been bereaved 40 or 50 years ago knit for us," she reveals
Feileacain say it is vital to the grieving process that parents are made aware of all their options.
"We didn't know that we could take Roisin home so we didn't ask," Helen says. "It's something we would love to have done."
Where once parents could only spend an hour or two with their babies, now – thanks to their importation of 'Cuddle Cots' that help regulate the babies core temperature and preserves them longer – they can bring them homTe for up to two days, which can help other siblings come to terms with the death.
"When we had a child that died, we all had other children," says Helen.
"We all felt it was important that they knew their sisters or brothers and grieved for them.
"Otherwise, they just remember that their mother went away for a couple of days and that she had no baby and was sad."
"My biggest fear was that we would forget our girls," says Liz.
"I kept thinking 'I'll forget them, I'll forget them, I'll forget them'. They might be dead but I still care for them as much as I do my other children.
"The day after the funeral, it poured from the heavens and all I wanted to do was stand over the grave with an umbrella to keep them dry.
"Then we met a couple that were in their 70s, in Ennis, who lost their son 40 years ago. They thought of him every day. I got so much comfort out of that."
A memorial Mass will be held on Sunday, December 1, at 4pm at St Joseph's, SMA Church, Wilton. Parents attending the memorial service are encouraged to bring a toy appropriate to the age their child would have been, which will be donated to children in need through the charity Barnardo's.