NICE are NASTY (3)

My experience of losing Matthew was made easier by the health proffessionals and guidelines that are available through the Stillbirth And Neonatal Death Society (SANDS) a charity whos 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

Many years ago these guidelines were not available and many parents never had the experience of holding their babies indeed some were not allowed to even see their babies it was a time when midwives sent mothers home with a cheery, "Never mind dear, you can have another one"as if you had lost something you had bought in a supermarket or, "See you in nine months"as if you'd made a mistake this time round.

Linda's baby boy, Jo, died in 1974 she says: "In June 1974, I gave birth to my first born son. I never saw him. Eighteen weeks into the pregnancy problems had started. I was told that I would miscarry, that unless I could hold on to my baby until twenty-eight weeks he had no chance of life. Nothing could be done, I was to carry on as normal. During the following weeks he grew, he moved, he kicked - but we only managed twenty-five weeks.
I went into labour, gave birth, he cried - more of a whimper really - but I heard him. They took him away. Hours later, they told me he had just died. I can remember exactly every word spoken, every action, every feeling, every detail of that day, right up to that point. Then nothing.
I never saw him, never held him. I have no memory of him, nor him of me, this side of birth. He lived and died alone.
I was told to forget, to get on with my life, to get pregnant again. That it was just one of those things. I was told it was best not to talk or even think about him. I learnt later that as he was a live birth he had been registered and buried. But it was thought best that I didn't know. I wasn't told about the funeral of my son.I had to forget. But you don't, do you?
Twenty-four years later various events happened in my life and memories of that baby became very prominent. I told myself that I was being stupid, it was long past. But the thoughts would not go away. The sadness, the aching, would not go away.
Eventually I was persuaded to see a psychologist, Anne, who was compassionate and wise. At last I was able to talk about my baby. It was allowed. It was not silly but quite normal, even necessary.
I found a copy of his birth certificate, there was a blank space where his name should have been. I found the cemetery, the entry in their records. Again, no name. I found the patch of grass that was his unmarked grave where he lay with three other babies. Now he was real, he had lived, he was mine.Anne asked if I wanted to give him a name, maybe write what I wanted to say to him. Yes, oh yes.
I needed to know what he may have looked like, so Anne arranged for me to visit the special care unit at the local hospital. I met another mother and her tiny daughter and the nurses who were caring for them. I listened, I watched and that perfect, beautiful little person held my finger. I found out how things have changed. All the people in that room were special. Individuals - whatever their size. No blank spaces. There was so much love and understanding in that ward. I came way convinced that no-one, but no-one, ever has the right to separate a mother from her baby. Now, at last, this is understood. But there must be so many women of my generation and older who are still trying to forget and not succeeding.

That night I cried, wept for my baby, my son I never held.

Anne says "At 36 weeks they said my baby was small and it would be better if she was born now.
After 36 hours of labour I was finally told my baby was dead and that I needed an emergency Caesarean Section. I remember everything, every detail, every word spoken, every action, every feeling. I thought I was going to die and I wanted to.
Then nothing. A blank space, a void where there should have been a new life starting.
I asked questions which were mostly avoided or went unanswered. I was not allowed to see or to hold her. I was told to forget, get on with my life, to get pregnant again. I was told my daughter had Hydrocephalus and Spina Bifida. When I asked about the funeral was told that she had been 'slipped' in with someone-else. When I tried to give her a name I was told there was no provision to name a stillborn child.

Catherine lost her daughter in April 1968 she says "No-one asked if we would like to see her, hold her or have a photograph. We were not allowed, in those days, to name her. We have no birth or death certificates and it was not thought that she deserved a proper funeral. When I was still in hospital, my husband was paying for her burial.Two weeks after my confinement I found a new job - no maternity leave then - and tried to get back to normal as was expected of me."

Chris lost her daughter in 1973 and started a local group in conjunction with two other mothers, She became chair of the then fledgling 'Stillbirth and Perinatal Death Society', which later became SANDS. "It was such a relief to meet other mothers and be able to talk and share experiences with them. Up till then I had never met anyone else who had been bereaved in this way, and although I knew the statistics, there had been many times when I had felt I was the only one in the whole world."
"Like many others of my generation, I have no memorials - no photos, locks of hair, foot or handprints. The nearest to a real memento is the wrist band which I was wearing when I came out of the hospital and of course her birth and death certificates. On days when I wonder if it was all a bad dream these would have helped to reassure me that she did exist."
"Sometimes it is difficult not to feel jealous of modern parents, but I try to remember that we campaigned all these years ago to make it the way it is in many areas today. Our group bought High Wycombe Hospital their first Polaroid camera, and I made two little gowns, one pink and one blue, so that babies did not have be photographed in a hospital one."