To mark Babyloss Awareness Week, Maureen Coleman talks to four mums who lost their children.
The death of a baby is the most traumatic experience a mother or father will ever have to cope with. Life After Loss was set up in 2006 by a group of local mothers to offer support to those women who have lost babies through miscarriage, stillbirth, neo-natal death or sudden infant death syndrome. The organisation was established originally as an online support forum for bereaved families, which is available 24 hours a day, seven days a week for grieving parents to read and post messages, giving and receiving support.
In 2007, Life After Loss became a registered charity, opening its first office in Carrickfergus.
It now holds regular coffee mornings/evenings in the office as well as a coffee evening in Antrim.
From today until next Monday, a number of events have been planned to mark Babyloss Awareness Week. This evening MLAs Brenda Hale and Jo-Anne Dobson will host a reception to launch its Faces of Babyloss photo project, a collection of 22 photos showing families who have lost a much-wanted baby.
On Sunday, Babyloss Awareness Balloons will be released at Belfast Castle at 4 pm while the week will culminate next Monday with The International Wave of Light.
At 7pm bereaved families across the world will light a candle in memory of their babies, creating a “wave of light” across the time zones.
We speak to four women who have all gone through the pain of losing a baby and found out how Life After Loss has helped them cope with their grief.
‘Losing my baby daughter Grace has broken my heart, but those 23 hours with her were so precious’
Kathryn Boyd (25), is a sales rep who lives in Castlereagh with her partner Michael Opie. Her daughter Grace died 23 hours after birth from Congenital Diaphragmatic Hernia. She says:
My little girl Grace died just five weeks ago from Congenital Diaphragmatic Hernia. Before the diagnosis, I knew nothing about CDH, but it's as common as Cerebral Palsy or Spina Bifida.
As a result of a hole in the left side of her diaphragm, Grace's stomach and intestines had migrated into her chest area, compressing her lungs and heart.
During my 20-week scan her stomach showed up as a black area and I was told it was in her ribcage. Because of this I was a high risk pregnancy and had to have regular scans. With some babies the hole can be small, but with Grace, it was significant. As a result of her organs moving into the chest cavity, her lungs had nowhere to grow and didn't develop properly. There was a secondary problem too, her heart was pushed over to the wrong side and the left side of her heart was underdeveloped.
At 20 weeks I was offered a termination but with a 50/50% chance of survival, I said no. The worst thing is that the doctors can't tell you what the outcome is going to be, they don't have the equipment for this prognosis. It's a case of keeping your fingers crossed to see what happens.
Some babies with CDH do survive. In a way, it defies medicine and there is still research being done into it. They don't know what causes it, but it's nothing to do with anything the mother has done. In some rare cases it can be linked to a genetic syndrome.
Michael and I brought Grace home to my mum and dad's after she died in hospital. It sounds strange, but it was lovely. We had an open coffin and she just looked like she was sleeping. Everyone who wanted to meet her got that chance. It hasn't put me off trying again, those 23 hours with Grace were the best and I’ve got such a great support network on both sides of my family.
The pain is still very raw but I've been trying to find out more about CDH. There are no support groups here, no leaflets when you get a diagnosis. There’s a CDH charity in England which is hoping to start up an awareness group here. Next March I'm organising a gala event at La Mon to help raise awareness.
Losing Grace has broken my heart. I can't stop another mother getting a diagnosis, but what I'd like to be able to do is help make that journey a little bit easier.
‘I’d hopes dreams and aspirations for my baby, but it was all taken away’
Louise Marks (33), a support officer, lives in Newtownabbey with her husband, Peter, and two children Rhyleigh (7) and Jaxen (2). She miscarried her baby at 10 weeks. She says:
I had my miscarriage in April last year when I was 10 weeks pregnant. l had gone along to my doctor's for a routine scan and she sent me to the Royal's Early Pregnancy Clinic.
I already had two children and my second pregnancy had been bad, so that's why I was having a routine scan at 10 weeks, instead of the normal 12.
I went to the hospital with my husband Peter and they told me they couldn't find the baby's heartbeat. But they said this could be because of the way the baby was lying and sent me home, telling me to come back the following Friday.
I was devastated. As far as I was concerned, I was still pregnant. I'd had no cramps or bleeding and was still having morning sickness.
That week was horrendous, not knowing if my baby was dead or not. I kept doing pregnancy tests and they all came back positive, so when I saw that blue line I was sure it would all be all right. When I returned to the hospital for more intense scans, I was told I had definitely lost the baby. They called it a missed miscarriage because I had no symptoms. I then had to undergo a D&C.
I'd given birth to my second daughter by C-section in the very theatre where I had to have the D&C. I remember waking up and thinking how different it was this time. The only way I can describe it is a feeling of emptiness.
I signed a consent form to allow for tests to be carried out and the results showed some type of chromosome imbalance, although they can never really give you a definitive answer. I know I was early on in my pregnancy, but losing the baby floored me. I had people say to me afterwards: ‘sure you've already got two lovely children' or ‘you can always try again', but that doesn't take away from the pain.
The baby was due on my husband's birthday, which was awful when it came round. I had no choice but to get through it. From the moment I saw that first blue line, the baby was part of our lives and our futures. I had hopes, dreams, aspirations. But that was all taken away from me.
Life After Loss has helped me so much, the support I've received has been phenomenal. It helps to know that I'm not alone and there are people to talk to.
‘I walked out of hospital with a memory box instead of my baby’
Sarah-Jane Montgomery (37), a clerical officer, lives in Carrickfergus with her husband Geoffrey and daughter Xena (5). Her baby boy James was delivered stillborn. She says:
On August 26, 2010, I gave birth to James at the Royal Victoria Hospital in Belfast. I knew two days before he was delivered that his heart had stopped beating.
Because I have diabetes I had to go for scans every two weeks and during the course of a routine scan I was told baby James was dead. I was in a complete state of shock.
They sent for my husband Geoffrey and he came to the hospital and took me home that night.
Geoffrey was told to ring the delivery suite the next morning to see if a bed was ready.
I was brought back in the following afternoon at 2pm and the next day, at 4.45 in the morning, I gave birth to James.
I had to be induced and had to go through labour. It was heart-breaking. I was in a special room in the hospital, away from the other mums in the delivery suite. But I could still hear the crying of the newborn babies.
We hadn't known beforehand what sex the baby was, we only found out we'd had a little boy when James was delivered. He was a perfect baby, 71bs 8oz. I was told there had been placenta insufficiency.
Walking out of the hospital was gut-wrenching. I was carrying a little memory box the staff had given me, containing his footprints, his handprints and a lock of hair. But I should have been carrying my baby. I felt empty and cried the whole way home. It was devastating for Geoffrey as well, he was heartbroken.
I'd known the pain of loss before when my father had died but this was different.
We had named James after my grandfather and although he was 89 and ill at the time, he still came down to the funeral parlour to see him. My grandparents took it very badly.
When my grandfather was dying just six weeks ago, I told him to go and look after his name-sake for me. It gives me some comfort to think they are together, along with my dad.
My five-year-old daughter Xena came to the funeral, it was important for me that she was there. She still cries about her little brother and she knows he's in heaven. She keeps a photograph of him beside her bed.
When she started primary school last year, things really hit me. I hit rock bottom, I was teary all the time. Then Geoffrey saw an ad in the paper about Life After Loss and I haven't looked back since.
Three months after my first meeting, I was able to come off my anti-depressants. I am now back at work.
Life After Loss has been my saviour. I don't think I will ever get over baby James, he's still part of our lives.
When people ask me how many children I have, I say two. It's just that one of them isn't here.
‘I remember saying she couldn’t die, it was Christmas Eve’
Donna Madden (30), from Lisburn, lost her baby daughter Holly at just over three weeks old to Sudden Infant Death Syndrome. She has three sons, Steven (10), Billy (3) and Neil (16 months). She says:
My baby Holly died on Christmas Eve, 2001. It was 11 years ago this year but I can still remember it clearly. I'd bathed her and put her in her Moses basket, then went up to bed to get some sleep.
I left her downstairs with Holly's dad looking after her. Next thing I was woken up by him shouting. He ran into the room with Holly in his arms. I knew as soon as I saw her that she was dead, her wee lips had turned blue.
I snatched Holly off him and tried to revive her. We rang 999 and the paramedics came. They took her off me and tried to resuscitate her. I remember being in the ambulance saying: “She can't die, it's Christmas Eve”.
The paramedics were crying.
We were in the relatives' room in the hospital for hours. When the doctors hadn't come to see me I started to think that maybe she was ok after all. I'd phoned my dad, though I can't recall doing that, and just as he arrived, the doctors came in and pronounced Holly dead. I collapsed.
Holly was put into a hospital bed and I kept trying to lift her to feed her, I was in such a state of shock. The police arrived because it was a sudden death and she was taken away for a post-mortem. The result was inconclusive cot death.
I was so angry, angry at the world, at myself for leaving her that night to go and get some sleep. People told me it was God's will but I couldn't understand why God would take an innocent baby.
Holly was buried the day after Boxing Day. I spent Christmas Day at the funeral parlour. She was in a little coffin and when I saw her, I went to pieces. But we were allowed to bring her home to mum's for a night and I got to spend that time with her.
Afterwards, people who knew me would cross to the other side of the street to avoid me, they didn't know what to say. I was the woman whose baby had died. There was no real support or counselling for me, that's why Life After Loss is so important.
I have three little boys now, aged 10, three and 15 months. Christmas is hard but I have to make it special for them. When I'm putting out their presents I'm always aware that there should be another child's under the tree.
The boys know about Holly. We talk about her, we have pictures of her and we visit her grave. My eldest boy Steven calls it Holly's Garden. Baby deaths tend to be swept under the carpet, so I want to help raise awareness of SIDS and to let other women know they are not alone.
The pain never goes away, it will always be with me. But I've just learned to live with it now.
Fall in number of tragic deaths
- Over the past 30 years the numbers of stillbirths and infant deaths (the deaths of babies aged under one year) have both fallen by 60% here.
- In 2010 there were 105 stillbirths and 146 infant deaths — 76 males and 70 females. 116 of the infant deaths occured within one month of birth.
- In 2011 there were 91 still births and 110 infant deaths, both representing the lowest death rates since records began.
- For more details about the work of Life After Loss go to www.lifeafterloss.org.uk