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'It was awful taking Grace home in a wee coffin, but talking about losing a baby shouldn't be taboo'

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So cherished Karen Boyle loves spending time with daughters Aimee (left) and Ava

So cherished Karen Boyle loves spending time with daughters Aimee (left) and Ava

Proud mum: Karen with Ava and Aimee

Proud mum: Karen with Ava and Aimee

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So cherished Karen Boyle loves spending time with daughters Aimee (left) and Ava

Hundreds of local parents will join millions of people across the globe tomorrow in lighting a candle to burn for an hour in memory of their babies who they lost at birth, or shortly after birth.

Baby Loss Awareness Week, which will culminate with the special international Wave of Light candle event, gives sorrowing mums and dads a chance to do something special to acknowledge and remember their babies.

Also crucially for the parents, it is an opportunity to raise awareness of the emotional impact of pregnancy and infant loss, a subject which many of them feel is still very much taboo in our society, enhancing the isolation they felt after they were engulfed by tragedy.

During the past seven days there have been numerous events staged all over the country with local parents and support groups from the Sands stillbirth and neonatal death charity holding remembrance services, hosting fundraising events and wearing Baby Loss Awareness pins in memory of their children.

The Wave of Light event also gives local families the chance to unite with others across the world in honour of those babies who lit up their lives for such a short time.

"Lighting a candle for a baby who has died is a very poignant and special way to remember," says a spokesperson for the charity Sands.

"Parents are invited to simply light a candle at 7pm tomorrow night and leave it burning for at least one hour to join us in remembering all the babies that have died during pregnancy, or during or after birth.

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"They can do this with the knowledge that there are many others across the globe doing the same thing."

In the Newry home of mum Karen Boyle, a special candle will burn for the hour to illuminate a picture of her baby, Grace, who she lost at birth on November 10, 2009.

For Karen it's a welcome chance to do something special to remember the little girl she never got to know in life but who has been on her mind and in her heart every day of the past five years.

Karen knows the loneliness of losing a baby at birth which is why she now volunteers as a befriender in her local Sands support group in Newry and also serves as a member of the charity's Northern Ireland steering committee.

Like so many other mums who are grieving for their baby, Karen enjoyed a healthy pregnancy which made losing Grace all the more shocking.

Karen (37), a civil servant, is married to Rowan (42), a factory worker, and they have two other girls, Aimee (8) and Ava (3).

Having enjoyed a normal pregnancy with her first daughter Aimee, Karen had no cause for concern when she was expecting Grace three years later.

She recalls the terrible night in November 2009 when, at 39 weeks pregnant and so close to the birth of her second child, things suddenly took a turn for the worse.

"I had a normal pregnancy and there were no fears or worries; then in the middle of the night I started to bleed," she recalls.

"I knew because of the level of bleeding that it was serious and I rang the hospital immediately. I lived only five minutes away so I was able to get to them pretty quickly.

"They dealt with it as an emergency and they scanned me immediately. I wasn't told anything at that stage. The midwife said she would have to get the consultant in as it was 5 o'clock in the morning and there was no consultant on duty.

"He came and just told us there was no heartbeat and our baby had died."

Karen had suffered placenta abruption, which happens when there is bleeding between the placenta and the wall of the womb.

Hers was a severe case which caused the placenta to completely separate from the lining of the womb, cutting off the supply of oxygen and nutrients to little Grace. It happens in up to one in 50 pregnancies and is most likely to happen in late pregnancy or during labour.

It's not known what causes it but it is believed mums who smoke during pregnancy or experience a trauma of some sort are at an increased risk, although neither of these things applied to Karen.

Karen faced giving birth to little Grace knowing she had lost her. In the trauma of those few hours she had no idea her own life was also in jeopardy.

"I had eight hours of labour and delivered Grace myself," she says. "I have to say the staff and everyone in the hospital were fantastic in the care they gave us.

"It was a horrible experience. I was just distraught. I am quite a strong person and I did try and hold it together as best I could. My husband was probably worse than me at that stage.

"I was quite ill but didn't realise it. They put a central line in and thought I might need a blood transfusion, but thankfully I didn't.

"They had told my husband that he could have lost his wife as well as his daughter, and it wasn't until much later that it hit me that I was in danger, too and that it could have been much worse."

Karen was moved into a side ward and Rowan was allowed to stay with her overnight so that they could spend time alone with their baby. It was a special few hours when both mother and father were able to hold and talk to their little girl.

Family and friends also got to visit and see Grace and hold her before she was moved to a quiet room in the hospital where she was placed in her baby coffin.

"There was just the three of us together and it was good to have that time in the hospital with Grace," says Karen.

"When she was put in the quiet room I was given a key and could go in and out and see her. It was a very precious time with her and we will never forget those couple of days.

"Sands give you a memory box, which is brilliant because you are not thinking straight and you don't know what to do.

"In the box is an SD memory card for your camera to allow you to take pictures, as well as a wee box for you to put in a lock of hair and her wee finger and toe nails.

"There are also practical leaflets on coping, which I found useful later on."

Instead of leaving hospital with her little baby strapped into her new babyseat, the couple returned home two days after her birth with Grace in a coffin.

"Leaving hospital was horrible and it was very emotional taking Grace home in a wee coffin," says Karen.

"My parents kept Aimee, who was only three and was too young to understand what was happening. Rowan and I spent that night with Grace on our own before her funeral the next day."

It was a heartbreaking time and after burying her daughter Karen knew that she needed support to get through the difficult days ahead.

Just two weeks after Grace's death she went along to her local meeting of the Sands parents support group and immediately felt at home among people who had experienced the same pain and knew exactly what she was going through.

She has rarely missed a meeting since and is now dedicated to offering the same valuable support to newly bereaved parents as a befriender for the charity.

"You do feel so lonely," she says. "As good as family and friends are they can't know how you feel because they haven't been through it.

"There is not a day that goes by when I don't think of Grace, and all the milestones are especially hard. Grace would have started primary one this year and last year would have been going into nursery.

"I can talk about it now but for a long time I couldn't talk about it without crying.

"Sands definitely helped. You are with other people who have been through it and you don't feel as alone or isolated.

"I just felt I needed to talk and that's why I went so soon to Sands. Obviously I was very apprehensive going in but immediately I felt at home and was glad I went. It is such a friendly group and I have hardly missed a meeting since.

"I also feel that it is still a taboo subject and a baby's death is very much the elephant in the room for some people. If it was the loss of an older person I think people feel easier talking about it because they have memories, but with a newborn baby there are no memories to talk about. People think that when you have other children you must be ok and, yes, my two other girls really do help, but it's the three I wanted, not two."

Karen also faced a terrible nine months of fear when she did finally find the courage to try for a baby again following Grace's death. She didn't want her oldest daughter Aimee to be a lone child but was terrified of what might happen when she decided to have another child.

"I'm sure the hospital thought I was nuts," she says. "I was never away from it asking for scans and check-ups at the slightest twinge. I was a bit bananas, but I was just so frightened.

"The pregnancy was fine and they took me in at 37 weeks rather than let me go to that 39-week point when I lost Grace.

"It was a horrendous nine months."

Now, as a befriender for Sands, Karen hosts local support meetings and volunteers to be at the end of the group's helpline for parents in despair.

Helping others and "feeling useful" has enabled her to cope with her own loss though she says it can be tough seeing newly bereaved parents in the early stages when their grief and pain is so raw.

Even though Grace is always in her thoughts and will never be forgotten, Karen welcomes Baby Loss Awareness Week as a chance to remember her baby in a special way.

"We always do something special as a family on her birthday and the girls know about their sister and we talk about her and will never forget her," she says.

"But having a special awareness week gives you a chance to do something more and to me what's also important is that it is a chance to put it out there in the public domain and remind people that it happens and try and get rid of the taboo.

"There are 17 parents across the UK facing the loss of a baby every day and it is still something people find hard to talk about."

Karen adds: "The Wave of Light is a lovely chance to do something special in Grace's memory. I light a candle at 7pm and put it in front of her wee picture and let it burn for an hour. It's good to mark it and it's just another wee day which we can make special in her memory."

Help for bereaved

  • Baby Loss Awareness Week is a campaign led by Sands in collaboration with a number of other charities supporting affected families including The Miscarriage Association, ARC (Antenatal Results and Choices), Bliss, The Ectopic Pregnancy Trust, The Lullaby Trust, and Group B Strep Support
  • Sands, the stillbirth and neonatal death charity, was established by bereaved parents in 1978 and obtained charity status in 1981. It has over 100 regional support groups across the UK
  • Sands core aims are to support anyone affected by the death of a baby; to work in partnership with health professionals to improve the quality of care and services offered to bereaved families; and to promote research and changes in practice that could help to reduce the loss of babies' lives
  • Sands NI are holding a candle lighting event at the Sands NI Memorial Baby Garden from 6.45-8pm at Kernan Cemetery, Kernan Hill Road, Portadown tomorrow night at 7pm
  • In 2012 there were 106 stillbirth deaths in Northern Ireland, and a total of 3,938 in the UK. Another 70 babies in Northern Ireland died within 28 days of birth and 57 survived for just one week
  • For details on the work of Sands and local support groups, visit www.uk-sands.org, tel: 020 7436 5881 or email helpline@uk-sands.org

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