STILLBIRTH: Q & A
You may, as we did/do, have a lot of questions about stillbirth, so we have put this section in Xanthe's website.
The below questions include: What is stillbirth? Do we need to register our baby's stillbirth? How often does stillbirth happen? Why does stillbirth happen? Why do parents spend time with their baby after birth? How do family and friends repond to stillbirth? How do the medical profession respond?
We have written this as bereaved parents (Emma has also drawn on her legal training and previous work, prior to having both children, in advocacy, information and research work) Please understand however we write this as devastated bereaved parents who want to help others and not as experts in this field. So please check all facts from alternative sources before proceeding with any matters as we can not be held accountable for any inaccuracies.
Q) What is stillbirth?
In the UK any baby that is born after 24 weeks of pregnancy but, devastatingly, without breathing or showing any other signs of life after being born is seen as stillborn (1) .
Stillbirth applies to any baby that dies after 24 weeks (less in some countries) of pregnancy but before they are born. This is primarily because at 24 weeks a baby is seen as viable (i.e. could live independently outside the womb).
Q) Do we need to register our baby's stillbirth?
In the UK all stillbirths must be registered at your local register office normally within 42 days (and cannot be done after 3 months). The baby's parents will get a Stillbirth Certificate (2) .
Stillbirths are not a public registry and therefore only the mother or father (if named) can get copies of your baby's birth certificate (unless the baby's parents are deceased). Copies can be obtained by the mother or named father from the General Register Office (3) . Registration in the UK began on 1st July 1927; if you are parents (or siblings if your parents are deceased) trying to obtain a copy of your child's stillbirth certificate you can contact the General Reigster Office.
It was incredibly distressing going to register Xanthe’s stillbirth. We went to the Registry Office after we left Xanthe at the hospital. One of the midwives had made an appointment for us to do so. If you are parents going to register your baby's stillbirth you may well want to take a friend or relative with you to provide emotional support for you.
Q) How often does stillbirth happen?
In the UK over 1 in 200 pregnancies end in stillbirth. In other parts of the world the rates are higher. In the UK approximately a third of stillbirths happen when the mother is full term (4).
In the UK there are 10 times as many stillbirths each year as there are cotdeaths (otherwise known as Sudden Infant Death Syndrome) and yet people are often not aware that stillbirth is a modern risk (as we were not) (5). In 2005 300 babies died from cotdeath, however there were over 3,600 stillbirths (5b) .
Since the 1990s there has not been a reduction in the amount of stillbirths (6). The Confidential Enquiry into Maternal and Child Health state "This lack of progress in reducing the stillbirth rate is a matter of public health concern" (7) . We would go further than this and say it is a matter of serious concern and that the government must make it their highest priority to protect our youngest members of society.
Q) Why does stillbirth happen?
There are a number of causes that the medical profession know of, these include: problems with the placenta; umbilical cord problems; problems to do with the womb; maternal infections that can cross the placenta (such as listeriosis & toxoplasmosis); developmental problems with the baby (e.g chromosomal abnormalities); maternal ill health caused by pregnancy (e.g. obstetric cholestasis or pre-eclampsia); other maternal health problems (e.g Lupus or APS); problems in labour; prematurity; and lung problems in the baby (8) .
Astonishingly though many stillbirths are unexplained (just over 50% if using the current classification system, used in CEMCH) (9) . Of the "unexplained" category some of the babies were growth restricted (i.e. a lot smaller than they should have been) although an exact cause for death and restricted growth is never established.
A variety of studies show an association between stillbirth and various factors such as more than the recommended alcohol consumption; stillbirth and high caffeine intake (10) ; stillbirth and socio-economic deprivation (11) ; stillbirth and smoking (12) ; stillbirth and maternal obesity (13) and stillbirth and a previous caesarean birth (14) . This means that there is a higher prevalence of stillbirths in mothers who the associating factor applies to, but it is still often a very small increased risk. It does not of course show a cause and it's effect, also other scientists may well dispute these studies claims.
In Xanthe's case tests were done and the known possible causes of her death have been ruled out. The associating factors do not apply in our situation either. Furthermore Xanthe was not growth restricted and weighed 8Ib 3oz. We lead an exceptionally healhty lifestyle, attended all ante-natal appointments, both ultrasound scans showed no problems with our daughter and Emma had no signs or symptoms that alerted us, our midwives or our GP.
We have heard from other parents in our situation who were also very careful throughout their pregnancy and who also had no signs or symptoms that anything was wrong with their baby and yet their baby also died unexpectedly.
This should not happen and we believe the government should put far more resources into finding out why this happens to our babies and to our families and to preventing it. Most of the books and articles that we read about stillbirth state steps the mother can take to decrease her risk of stillbirth but these, inadvertently perhaps, suggest that by monitoring a babies movements or attending all appointments or by being festitidously healthy we can prevent stillbirth. Well, perhaps sometimes this is true, but rather more it turns the blame to the mother and we are here to say that you can do everything right for your baby and still, still devastatingly they can die.
Q) Why do parents spend time with their baby after birth?
This, to us, seems a strange question but it has been suggested that perhaps it would have been easier if we had not spent time with Xanthe after she was born/died.
We waited for 9 precious months for the birth of Xanthe and although absolutely shattered by her death we wanted to spend that time with her (nearly 12 hours). After all those bonding months and after a natural labour we dearly want to see and hold our daughter even though she was dead. The absolute last thing in the world you want to do is bury your baby after you have given birth to them.
SANDS (Stillbirth and Neonatal Death Society) have educated the medical profession and the public so that it is widely understood nowadays that most parents need this time with their baby and those who do not have it tend to deeply regret it. It is now understood that parents greatly bond with their baby whilst they are still in the womb. Labour of course and the planning and expectations bring you even closer to your baby. Physiologically and mentally all you want to do is have your baby to protect and feed. It has been found that parents who do not see their babies may sometimes suffer from pathological grief (severe and debilitating, even more so than "normal" grief apparently). It is hard enough to believe that it is true and that Xanthe really was dead (we slipped in and out of reality and still do) but if you do not see your baby we would not want to imagine what thoughts might run through your mind. You love your baby no less because they are dead and you long to hold them no less than if they were alive.
However this being said some parents do decide not to hold or spend this time with their baby and although most parents are encouraged to do so it is obviously the parents choice and therefore should be respected. Parents may decide not to hold their baby for all sorts of reason and whilst this would not have been the right decision for us, we can see that it is important that the baby's parents are supported in whatever they do.
Q) What Research is being done into unexplained stillbirth?
Over half of the 3,600 yearly stillbirths in the UK are unexplained and science seems to know very little about why this happens or what can be done to prevent these babies, who are often in low risk pregnancies where no problems have been identified, from dying. What is worse is that no-one seems very interested in finding out either. In the 1990s some important research work was done (mostly epidemiological research in Australia) into cotdeath and consquently the number of cotdeaths were cut dramatically. Now stillbirth happens ten times as often as stillbirth and it is time for the UK to do for stillbirth what the Australians did for cotdeath - we need more epidemiological studies in this field!
We have been gathering information to establish how much UK research is focusing on unexplained stillbirth. We have spoken to a number of organisations (including SANDS, Tommy's and Piggy Bank Kids). These organisations are doing a lot of worthwile work, however, there is very little research being carried out specifically into unexplained stillbirth. The Perinatal Institute (in the West Midlands) have put in place some strategies (see their website) to reduce the West Midlands' high rates of stillbirth. Tommy's is undertaking research into several areas of stillbirth where a cause is already known (such as obstetric cholestasis) and Piggy Bank Kids is undertaking work into pre-eclampsia and premature birth. Piggy Bank Kids are also undertaking some important research looking at placenta related problems and babies that have intra-uterine growth restriction. This research may be an important part of solving the mystery of unexplained stillbirth, but equally it may not. Much more could to be done around research specifically addressing unexplained stillbirth where there are no obvious factors which might point to a problem: more epidemiological studies identifying patterns of behaviour, medical history and risk factors could give rise to useful prevention strategies, as was the case for cot death. We need to reinforce the epidemiological research being carried out by the Australian Stillbirth Foundation, and to add to it by carrying out our own studies. We could, for example look at the use of kick counting as an effective measure of preventing stillbirth (over which there is much debate and controversy but little research) and if it proves to be an effective preventative measure there would be a good case to be made for a public health campaign around the issue (and if it does not, then this could be made clear, saving many parents a lot of anxiety.) We could research the role of devices like the Monica and whether usage of this could prevent unexplained stillbirths (and establish which pregnancies to monitor if it is a useful diagnostic tool.) We could identify whether ultrasound scans at different times or more or less often, could lower the rates of unexplained stillbirth and so on.... Given encouragement and funding the research and scientific communities have many avenues of research that could, if successful, lower the rates of unexplained stillbirth.
The Australian Stillbirth Foundation are carrying out in Australia a "multi-centre prospective hospital based case control study that aims to access the risk factors of unexplained stillbirth in infants more than 32 weeks". Why are we not (seemingly) undertaking similar research in the UK, surely now is the time to undertake wide scale epidemiological studies into unexplained stillbirth? The answer (according to some of the people in the field that we spoke to) is economics. Research is expensive and the Treasury are not prepared to spend their money on something which is apparently more costly to the NHS to research than to leave unresolved (than say the long term care of cancer patients as compared to the cost of getting these people cured). This is of course outrageous! Please see our campaign page if you want to read more about this area. You may also want to view some of the websites of the organisations listed above.
Q) How do the medical profession respond ?
10) Aarhus University Hospital study, Denmark
11) Confidential Enquiry into Maternal Health Report
12) Institute of child Health & Great Ormond Street & Homerton Hospitals
13) Department of obstetrics & Gyn., Imperial College School of Medicine
14) Cambridge University Team
15) Empty Cradle Broken Heart: Surviving the Death of Your Baby, Davis, D.L, Fulcrum Publishing
16) When Bad things happen to good people, Harold Kushner, Pan Books
We really hope that you, like us, have found that the medical profession have done their best to support you during your pregnancy and that they have continued to offer you appropriate support since your baby was stillborn.
If you have not found your medical profession have responded appropriately (depending on the circumstances) you may want to ask a relative or family member to help you get the appropriate service. You can also find out if there is an independent health advocacy service in your area or ask the local Patient Advisory and Liason Service to assist (there is a PALS attached to each hospital, see the link).
If however you are concerned about the way that the medical profession responded and you want to make a complaint you can do this either on your own or with the assistance of a relative, independent health advocate (if there is one in your area), Patient Advisory and Liaison Service or a solicitor. Indeed if the situation is even more serious and you feel that you need to instigate legal proceedings you should consider contacting a solicitor (please see the Practical Issues section). You may find that the charity Action Agaist Medical Accidents (AVMA) will be able to give you some initial advice. They provide free and confidential advice on their helpline: 0845 123 2352 (Monday-Friday 10am-12noon and 2-4pm).
The medical profession were thankfully very supportive to us. Our lovely midwife, who we had got to know through Xanthe's pregnancy, was very upset for us. It helped us to know that she understood and shared our grief. Our family GP was very kind and understanding too. Our Consultant Obstetician spent a long time with us straight after Xanthe was born and again about 5 weeks after Xanthe died going through the many, many questions we had by then. She was very sensitive. We have been offered (and accepted) grief counselling and CBT (Cognitive Behavioural Therapy) to help with PTSD.
We have since heard from other parents that they have sometimes not had such supportive medical staff but we were grateful that we did. Just a few decades ago I am afraid people were often told to "forget about 'it' " when they had a stillborn baby or a young baby die. This of course is impossible to do. SANDS have helped to change the way stillbirth and neonatal death are addressed. SANDS also provide a lot of invaluable support to mothers and fathers who grieve the death of their babies who died many decades ago but were not given the chance to acknowledge their grief at the time.
Let us know if you've got any more questions or have a question on someone elses behalf who has also had a baby who is stillborn or had a neonatal death.
Footnotes:
1) Stillbirth Definition Act 1992
2) Stillbirth Definition Act 1992
3) General Register Office, www.gro.gov.uk
4) Confidential Enquiry into Maternal Health Report- Perinatal Mortality 2005, April 2007
5) Tommy's Baby Charity at www.tommys.org
5b) Confidential Enquiry into Maternal Health Report- Perinatal Mortality 2005, April 2007 and Ibid
6) Confidential Enquiry into Maternal Health Report- Perinatal Mortality 2005, April 2007
7) Ibid
8) See the resources section - compiled from the books listed
9) Confidential Enquiry into Maternal Health Report- Perinatal Mortality 2005, April 2007. Note if the Extended Wigglesworth, Obstetric (Aberdeen) & Fetal and Neonatal Factor Classifications is used then in 2003 70.7% of all reported stillbirths were in the "unexplained" category