The following is taken from the SANDS website.
Seeing and holding your baby – Sands concern over NICE Guidelines
03.12.09
We wanted to make you aware of a difficult situation which we have been trying to overcome over the past few months regarding the choice that parents have to see and hold their baby after their baby has died.
We are very concerned that bereaved parents in the future may not be offered the opportunity to see and hold their baby after death.
This is because current guidelines issued by NICE (National Institute for Health and Clinical Excellence) to midwifery units and to bereaved parents, on seeing and holding a baby after the baby has died, are currently open to misinterpretation.
This guideline (Clinical Guideline 45: Antenatal and postnatal mental health) consists of 4 different documents:
1. The full clinical guidelines
2. Clinical management and service guidance
3. Quick reference guide
4. Information for people who use NHS services
In each of these the wording is slightly but significantly different but the current wording in the quick reference guide, which is specifically aimed at policy makers and staff states: “Do not routinely encourage mothers of infants who are stillborn or die soon after birth to see and hold the dead infant.”
We already have evidence that one Trust in England has adopted this wording as policy for staff. As a result we are deeply concerned that this wording will be used by other Trusts across the UK if confusion over the guidelines continues.
Neal Long, Sands Chief Executive: “The lack of consistency in such influential guidance from NICE and the recommendations that imply removing choice from parents is both shocking and extremely unhelpful to both parents and those caring for them. Not every parent may want to see and hold their baby but for many (certainly every parent we see at Sands) it is simply an act of parenting.”
“We want to see all documentation from NICE, including information for parents, to carry the same information as that laid out in the original Full Clinical Guideline, `that women should not be encouraged to hold their dead baby if they do not wish to’.”
“If the NICE Guidelines continue to be misinterpreted in such a way we will be returning to the Dark Ages of maternity care where health professionals dictate to mothers what is good for them and parents are denied their most basic right to see and hold their baby, spending time with them to say hello and goodbye in their own way. The memories created at this time are the only memories they will have of their baby.”
Sands maintains that parents must continue to be offered choice about what is done when their baby dies, and that in order for choice to be real, it must be informed. Parents have a fundamental right to see their own baby, and no health professional, however well meaning, has the right to deny them this choice.
We are extremely concerned by the inconsistent wording in the NICE guidelines and the implications this may have for bereaved parents. These concerns are highlighted in an article written by Judith Schott and Alix Henley from Sands, published today in the British Journal of Midwifery.
A shortened version of the article can be found below which outlines our position on the issue of the NICE guidelines.
NICE GUIDANCE ON SEEING AND HOLDING A STILLBORN BABY
The practice of offering parents opportunities to create memories and, in particular, to see and hold their babies after death, arose out of the anguish of those who had not been allowed to do so. In response, Sands has worked with health professionals over many years to promote a range of choices that parents can make, including seeing and holding their baby.
However in 2007, NICE published Clinical Guideline 45: Antenatal and postnatal mental health. This consists of four documents, each of which makes different statements about seeing and holding a stillborn infant:
1. The Full Clinical Guideline (369 pages) states, "The findings of [Hughes et al 2002] suggest that women should not be encouraged to hold their dead baby if they do not wish to” (Section 6.2.4 - page 196).
2. Clinical management and service guidance (48 pages) states, "Mothers whose infants are stillborn or die soon after birth should not be routinely encouraged to see and hold the dead infant” (Section 1.3.1.4 – page 16). “…if they do not wish to” has been omitted and “routinely” inserted.
3. Clinical management and service guidance: quick reference guide (21 pages) states, “Do not routinely encourage mothers of infants who are stillborn or die soon after birth to see and hold the dead infant” (Page 9).
NICE (2009) states that a quick reference guide “summarises the recommendations in an easy-to-use format for health professionals”. So this is the document most likely to be read by policy makers and practitioners. Indeed, Sands has evidence that at least one Trust has adopted the wording in the Quick reference guide as policy for staff.
4. Understanding NICE guidance: Information for people who use NHS services (27 pages) reads, “If your baby is stillborn: Although it is a rare event, sometimes babies are stillborn. You should be offered a chance to talk to a healthcare professional if this happens. But it is now considered unhelpful for women to see and hold their babies, unless they particularly wish to do so” (Page 9).
Such inconsistent guidance from an influential organisation is completely unacceptable, as are recommendations that imply removing choice from parents.
It is worth noting that in Postnatal care: Clinical Guideline 37 (2006) NICE states, “The views, beliefs and values of the woman, her partner and her family in relation to her care and that her of baby should be sought at all times…. Women should have the opportunity to make informed decisions about their care and any treatment needed…”.
It is hardly surprising that few newly bereaved parents think of asking for ways to create memories or know what is possible. Sands maintains that parents must continue to be offered choice about what is done when their baby dies, and that in order for choice to be real, it must be informed. Parents have a fundamental right to see their own baby if they want to, and no health professional, however well meaning, has the right to deny them this choice.
References
NICE (2006) Postnatal care Clinical Guideline 37, NICE, London
NICE (2007) Antenatal and postnatal mental health Clinical guideline 45, NICE, London
NICE (2009) How NICE clinical guidelines are developed: an overview for stakeholders, the public and the NHS (Fourth edition) NICE , London
Saturday 12 December 2009
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."
* 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."
Friday 11 December 2009
NICE are NASTY (2)
Early moments and the days
I had to make some choices! and that the choices I had to make about what I wanted to happen with Matthew in the early hours and days of his death were the most important choices I would make. I did not want any regrets of 'If only I had done it this way or that way' although it was so extremely difficult and hard to take in the reality of what had happened, I knew that the memories of this short time with my Matthew before I had to say goodbye were the most important to me, and I wanted no regrets to come back and haunt me for the rest of my life.
The choices I made are very personal to me and I needed time to think about it which I had very little of, I knew I needed to create memories not only in my mind but physical memories and I felt I wanted to share the memories with my family.
Fortunately for me I had the best team of midwives and nurses who were experienced in babyloss and were there to help and support me and help me get through the early days and most importantly advise me on the decisions I had to make.'Do I want a burial or cremation?''Do you want to hold him?''Do you want to bathe him and dress him?' 'Do you want photographs of him?'' Do you want footprints?''A lock of his hair?''Do you want him in your room with you?'
The questions are not the questions I was wanting to answer, the 'normal' thing to do when you have just given birth is to celebrate and take your live healthy baby home with you!
I chose to have Matthew in a moses basket in my room with me, when members of my family came to see me it was the most natural thing that they wanted to hold him and I know that sharing the memories of Matthew helped me get through and cope with my loss.
Practical issues and law
The practical things that had to be done in the early days like choosing to have a post mortem?, of course I wanted to know why my beautiful son had died, were the hardest to bear.
If your baby was stillborn after 24 weeks then registering your baby's name is a legal requirement. I felt that by registering Matthew at least his existence is officially acknowledged.
Arranging Matthew's funeral was made easier for me as my brother is a Baptist Minister he took alot of the arrangements with the funeral director away from me as far as I was concerned In the natural, logical order of things, parents are not expected to outlive their children. I should not be burying my son, I should not be burying him!
Holding Matthew was the most precious moments of my life,
*Most people only dream of angels, I got to hold one in my arms.
I had to make some choices! and that the choices I had to make about what I wanted to happen with Matthew in the early hours and days of his death were the most important choices I would make. I did not want any regrets of 'If only I had done it this way or that way' although it was so extremely difficult and hard to take in the reality of what had happened, I knew that the memories of this short time with my Matthew before I had to say goodbye were the most important to me, and I wanted no regrets to come back and haunt me for the rest of my life.
The choices I made are very personal to me and I needed time to think about it which I had very little of, I knew I needed to create memories not only in my mind but physical memories and I felt I wanted to share the memories with my family.
Fortunately for me I had the best team of midwives and nurses who were experienced in babyloss and were there to help and support me and help me get through the early days and most importantly advise me on the decisions I had to make.'Do I want a burial or cremation?''Do you want to hold him?''Do you want to bathe him and dress him?' 'Do you want photographs of him?'' Do you want footprints?''A lock of his hair?''Do you want him in your room with you?'
The questions are not the questions I was wanting to answer, the 'normal' thing to do when you have just given birth is to celebrate and take your live healthy baby home with you!
I chose to have Matthew in a moses basket in my room with me, when members of my family came to see me it was the most natural thing that they wanted to hold him and I know that sharing the memories of Matthew helped me get through and cope with my loss.
Practical issues and law
The practical things that had to be done in the early days like choosing to have a post mortem?, of course I wanted to know why my beautiful son had died, were the hardest to bear.
If your baby was stillborn after 24 weeks then registering your baby's name is a legal requirement. I felt that by registering Matthew at least his existence is officially acknowledged.
Arranging Matthew's funeral was made easier for me as my brother is a Baptist Minister he took alot of the arrangements with the funeral director away from me as far as I was concerned In the natural, logical order of things, parents are not expected to outlive their children. I should not be burying my son, I should not be burying him!
Holding Matthew was the most precious moments of my life,
*Most people only dream of angels, I got to hold one in my arms.
NICE are NASTY
This is my story
I already had 4 children when I was pregnant with my Matthew. My youngest daughter was 6 years old, so my new baby was a bit of a surprise to the husband(now ex)and me. The husband was furious that I could get "yourself pregnant"!! he didnt speak about my baby at all.
In March of 1991 when I was 5 months pg we moved in to my mummy's house,she had had a massive stroke in 1987 and needed 24 hour company. Then the ex started to acknowledge my baby (in company of course).
My mummy had a heart attack and was admitted to hospital on the 24th of May thank god she was ok. We arranged for her to come home on the 3rd of June, as it turned out I had an appointment at the same hosp that morning so I took my mummy's clothes with me and see her after my 36 week anti natal.
I knew there was something not right the evening before! but it was easier to keep thinking "its gonna be ok I got hospital appointment tomorrow" When it was my turn to see the midwife I was thinking "somethings wrong ..... I just know somethings wrong" when she listened for my babys heart my mind was screaming out "somethings wrong!" she didnt say a word to me, she went off and brought back heart monitor,she was feeling my baby to see "what position he is in" she listened again and again my mind was screaming out "somethings wrong!" she didnt say a word she went off again and came back with another monitor to "record his heartbeat".
I was strapped to this monitor and by then I was waiting for her to say "im sorry your baby has died" she didnt say a word!
she went off and came back with a form and another doctor to take me down and have a scan" as I laid there looking at my baby with no heartbeat I noticed the sonographer was much less chatty than usual and all the time my mind was screaming at her "tell me he has died! just say it!" she didnt say a word.
I was escorted up to anti-natal in silence and told to sit in a room, I waited for another midwife who I had never met before to "have a word with you" She came in the room and said "Your baby has died, and you need to go to the labour ward as soon as possible" I thought "there you ....you said it !!!!!"
I told her I had to go and see my mummy now, and they were waffling on about me having to go to the labour ward and I just kept replying "I have to see my mummy now"
I went to the ward where my mummy was and when I arrived a doctor was on the phone talking about this mad woman whos baby had died and she was on her way down to see her mum!!!!!!!!
When I told my mummy what had happened she cried like a child.
I phoned the ex and told him our baby had died and he said "you are joking!"
I said "who in their right mind would 'joke' about something so awful?"
I gave birth to my Matthew at 11am the next day after a long night of hearing 4 other babies being born.It was pure hell knowing after my final push my baby was not going to cry!
I held my son in my arms so close to me. He was the most beautiful baby and looked so peaceful and asleep. All he had to do was breath
discussing my babys funeral was the most painful conversation I have ever had.
I came home the next day and took a picture of my Matthew to show my mum she asked me if I called him Matthew I said "yes mummy, thats the name we chose for him 6 months ago"
I didnt tell mum about Matthews funeral because her health had deteriorated over the next few days and I didnt want her to be laying in the hospital bed thinking of me burying my baby
I stayed at home after my matthews funeral not wanting to go out and feeling an utter failure and more so for letting my children down.
I managed to go back to the hospital to visit my mummy on the 23rd of June I had a big cuddle with her and I so wanted to cry in her arms and be comforted and for her to say "it will be ok" but she was still poorly and I didnt want to make a scene and upset her ............ my lovely mummy died the next day.
to be continued >>>>>>>>>>>>
I already had 4 children when I was pregnant with my Matthew. My youngest daughter was 6 years old, so my new baby was a bit of a surprise to the husband(now ex)and me. The husband was furious that I could get "yourself pregnant"!! he didnt speak about my baby at all.
In March of 1991 when I was 5 months pg we moved in to my mummy's house,she had had a massive stroke in 1987 and needed 24 hour company. Then the ex started to acknowledge my baby (in company of course).
My mummy had a heart attack and was admitted to hospital on the 24th of May thank god she was ok. We arranged for her to come home on the 3rd of June, as it turned out I had an appointment at the same hosp that morning so I took my mummy's clothes with me and see her after my 36 week anti natal.
I knew there was something not right the evening before! but it was easier to keep thinking "its gonna be ok I got hospital appointment tomorrow" When it was my turn to see the midwife I was thinking "somethings wrong ..... I just know somethings wrong" when she listened for my babys heart my mind was screaming out "somethings wrong!" she didnt say a word to me, she went off and brought back heart monitor,she was feeling my baby to see "what position he is in" she listened again and again my mind was screaming out "somethings wrong!" she didnt say a word she went off again and came back with another monitor to "record his heartbeat".
I was strapped to this monitor and by then I was waiting for her to say "im sorry your baby has died" she didnt say a word!
she went off and came back with a form and another doctor to take me down and have a scan" as I laid there looking at my baby with no heartbeat I noticed the sonographer was much less chatty than usual and all the time my mind was screaming at her "tell me he has died! just say it!" she didnt say a word.
I was escorted up to anti-natal in silence and told to sit in a room, I waited for another midwife who I had never met before to "have a word with you" She came in the room and said "Your baby has died, and you need to go to the labour ward as soon as possible" I thought "there you ....you said it !!!!!"
I told her I had to go and see my mummy now, and they were waffling on about me having to go to the labour ward and I just kept replying "I have to see my mummy now"
I went to the ward where my mummy was and when I arrived a doctor was on the phone talking about this mad woman whos baby had died and she was on her way down to see her mum!!!!!!!!
When I told my mummy what had happened she cried like a child.
I phoned the ex and told him our baby had died and he said "you are joking!"
I said "who in their right mind would 'joke' about something so awful?"
I gave birth to my Matthew at 11am the next day after a long night of hearing 4 other babies being born.It was pure hell knowing after my final push my baby was not going to cry!
I held my son in my arms so close to me. He was the most beautiful baby and looked so peaceful and asleep. All he had to do was breath
discussing my babys funeral was the most painful conversation I have ever had.
I came home the next day and took a picture of my Matthew to show my mum she asked me if I called him Matthew I said "yes mummy, thats the name we chose for him 6 months ago"
I didnt tell mum about Matthews funeral because her health had deteriorated over the next few days and I didnt want her to be laying in the hospital bed thinking of me burying my baby
I stayed at home after my matthews funeral not wanting to go out and feeling an utter failure and more so for letting my children down.
I managed to go back to the hospital to visit my mummy on the 23rd of June I had a big cuddle with her and I so wanted to cry in her arms and be comforted and for her to say "it will be ok" but she was still poorly and I didnt want to make a scene and upset her ............ my lovely mummy died the next day.
to be continued >>>>>>>>>>>>
Subscribe to:
Posts (Atom)
