Seanad Éireann debate -
Wednesday, 2 Feb 1994

Vol. 139 No. 1

Stillbirths Registration Bill, 1994: Second Stage.

Question proposed: "That the Bill be now read a Second Time."

Minister for Equality and Law Reform (Mr. Taylor)

The purpose of this Bill is to provide for official registration of stillbirths. There are over 300 stillbirths each year in Ireland. A stillbirth can be a very traumatic event for the parents involved. When a child is stillborn, parents can be left devastated and grieving. Bereaved parents can experience a strong sense of loss and, indeed, some parents experience long term suffering as a result of the stillbirth.

The process of grieving after a bereavement has received considerable research attention in the last decade or so. An important facet of the process of coming to terms with, or adapting to, any loss involves recognition and acknowledgement of the person who has died. This acknowledgement facilitates appropriate grieving after the loss. Such validation is not available at present to the parents of stillborn children who receive no official recognition of the existence of their stillborn child. The establishment of a stillbirths register, as proposed in the Bill, would provide tangible evidence of the existence of stillborn children and so serve as a focus for the memories of bereaved parents.

There is some form of civil registration of stillbirths in most, if not all, other European Union countries. In this country, there have been calls from many quarters for the establishment of a stillbirths register. Bereaved parents, and in particular the Irish Stillbirth and Neonatal Death Society, ISANDS, have been campaigning on this issue for some time. The establishment of a stillbirths register was among the recommendations of the Second Commission on the Status of Women.

My approach to this Bill has been shaped by two considerations. On one hand, the rationale for stillbirths registration is essentially therapeutic. Stillbirths registration is primarily intended to comfort grieving parents rather than to serve an evidential or statistical purpose. Statistics on stillbirths are already compiled by the Central Statistics Office and by the Department of Health. Given its therapeutic rationale, the stillbirths registration system should not be unduly bureaucratic or impose additional burdens on bereaved parents. On the other hand, if an official register is to be created, some procedural formality is necessary to ensure the accuracy of the information recorded. The Bill aims to combine sensitivity to the needs of bereaved parents with the formality appropriate to a part of the civil registration system.

One of the first questions which had to be considered in drawing up the Bill was how to define a stillbirth. A stillborn child is a child born dead but viable outside the womb. There is, however, no universally accepted definition of what constitutes viability. In some countries, the demarcation between a miscarriage and a stillbirth is based on gestational age. The gestational age used was typically 28 weeks but because of advances in medical care this has been reducing. Twenty four weeks is now the threshold for stillbirths registration in the UK. Other countries base their definition on the weight of the child, 500 grammes being the normal weight used.

A case can be made for either criterion. Weight is more definitive than gestational age which can be difficult to assess. Weight is also the World Health Organisation's preferred criterion. On the other hand, gestational age reflects parents' expectations about the outcome of pregnancy more accurately than weight which is typically unknown. My view is that, since the main reason for establishing a register is to comfort grieving parents, the definition of a stillbirth in the Bill should be as wide as possible, consistent with accepted medical norms. I have therefore provided in section 2 that the Act will apply to a child who is born dead and who either weighs a minimum of 500 grammes or has a minimum gestational age of 24 weeks.

Section 3 of the Bill provides for the registration of stillbirths within the existing organisational framework for registration of births, deaths and marriages. In other words, responsibility for the registration of stillbirths would be assumed by the registrar-general, superintendant-registrars and the 300 local registrars. A stillbirth will, therefore, be registered at local level as is a birth or death.

As the stillbirths register is an official one and as certificates will be provided to parents, it is important the information held on the register be correct. I have, therefore, provided in section 5 that where the parents of the stillborn child are not married to each other, the procedural formalities for recording the father's name on the register will be the same as for a live birth. These procedures are set out in section 7 of the Births and Deaths Registration (Ireland) Act, 1880, as amended by section 49 of the Status of Children Act, 1987.

Section 6 of the Bill provides that registration will be compulsory in the case of stillbirths which occur on or after the commencement of this legislation. Compulsory registration of stillbirths is the norm in other jurisdictions. By making registration compulsory, I believe that we assert the official character and status of the register and thereby reinforce the reality of the stillborn child, particularly as perceived from the parents' point of view. I do recognise, however, that it would not be appropriate to add to the grief of the parents by imposing a duty on them to inform the registrar of a stillbirth or by pursuing them for failure to do so. Section 6 provides an option for the parents to inform the registrar of the stillbirth is they wish. If the parents do not choose to inform the local registrar themselves within a specified period, then the duty to inform the registrar will fall to the relevant hospital or, where no hospital is involved, to the relevant medical practitioner. This procedure will ensure that registration is comprehensive.

I am also making provision in section 7 for retrospective registration of stillbirths. A stillbirth which occurred at any time before the commencement of the Bill may be registered, at the request of either parent and subject to the production of satisfactory supporting documentation. This degree of retrospection is unusual in legislation but I am conscious of the fact that the suffering of bereaved parents of stillborn children can last for a long time, even for decades. I believe that a compassionate approach requires that we facilitate those who want official recognition of past stillbirths. Such retrospective registration will, of course, be purely voluntary as it would be neither practical nor desirable to make registration of past stillbirths compulsory.

Section 8 deals with stillbirths registers. Information held on these registers will not be accessible to the public. This differs from the position in relation to birth and death certificates, where any member of the public is entitled to search indexes of registers and is entitled to obtain any certificate simply by paying the required fee. In the case of stillbirths, no public interest would be served by having the information on the registers open to the public and, given the relatively small number of stillbirths each year, an openly accessible register could be seen as an invasion of privacy of the persons concerned. The register of stillbirths here, like those in the UK and Northern Ireland, will be private.

A certificate of a stillbirth will be available to the parents of the stillborn child, either at registration, if the parents choose to notify the registrar themselves, or subsequently, subject to verification of the parents' identity. Stillbirth certificates will otherwise be made available only at the discretion of the registrar-general. The fee will be the same as for a birth certificate. The format of the stillbirth certificate, which is detailed in the Schedule to the Bill, will resemble that of a birth certificate but will include information on the weight and gestational age of the child together with information on both the mother's and the father's occupation and other personal details in line with the recommendations of the Second Commission on the Status of Women.

I hope this Bill will be welcomed by all sides of the House. This is a measure which has been sought for some considerable time and I am very pleased to be able to introduce it. I look forward to positive contributions to the debate.

Mr. Neville

I welcome the Bill and congratulate the Minister for initiating it in the Seanad. Many may feel it is of minor concern but it is important legislation for many people. It is important for the parents of stillborn babies to know their child had an identity, that she or he was a human being, that the child had a name and that a birth certificate is available. This is an important area which is covered by this legislation.

The Bill has been campaigned for by the parents of stillborn children for over ten years and I compliment the work done by the Irish Stillbirth and Neonatal Death Society to this end. The Bill is important for bereaved parents because they will now have tangible evidence that their child existed. It is also important because it will provide accurate statistical information on stillbirths. This will assist researchers in this area and I hope it will improve the situation in regard to the number of stillbirths each year. Since November 1983 there have been approximately 3,000 stillbirths and the parents of these children have no official record of their births. The Bill allows for retrospection and this is welcome. It will give many parents who grieve for their child for many years after their birth, an opportunity to give him or her an official identity.

Ireland is the last EU country to establish a stillbirth register. Britain has had a register for 40 years and Northern Ireland has had one for 30 years. Like a lot of social legislation, Ireland is decades behind its European partners in legislating for a register of stillbirths.

The parents of a baby who has died before or after birth experience an array of emotions, including shock, disbelief, anger, failure and guilt. These feelings are a normal part of any reaction to grief, but they are more intense and last longer in the case of a prenatal death. However, unless grief becomes acceptance, the physical and mental health of bereaved parents and their families can be affected.

The first reaction of a parent who is told their baby is dead is shock. It can take hours for the reality of the tragedy to sink in. The parents, especially the mother, may feel angry. She is the first to learn the bad news and she may feel angry with the doctor who tells her, the obstetrician and the world who she blames for causing her extreme distress. She may also feel angry or guilty with herself and she may feel she is to blame for the death of her baby. Despite reassurances from doctors and medical staff, a mother can feel a sense of guilt at the loss of her baby.

Proper counselling of parents is important. In the past, parents, especially mothers, were cruelly treated in the way they were told about the death of their child. They were told the child was dead and they were then asked to sign a register. This showed a lack of counselling for the parents, especially the mother, who were in a difficult and distressful situation. There should be a dedicated counsellor in each health board area for the purpose of counselling people who are experiencing the trauma of the death of their child. This person could also counsel people and their families who have been told they have a terminal illness. This situation only exists in some health boards. We are currently looking at the Mid-Western Health Board because this service is not in existence there and it should be.

For weeks and months after a stillbirth the parents usually go through a period of deep sadness and emptiness. The mother often feels very alone and goes through intense pain from the loss of her child. No one can ever measure one person's pain against that of another, yet the loss of a baby can be the deepest loss any person can experience. There are good reasons for this. One expects to lose elderly parents but in this day and age one does not expect to lose a baby. A baby is an extension of the parents whose future plans have included the infant. One's role as a parent to provide, protect and nurture has been left unfulfilled. There is extreme loneliness in grieving for a baby; no one else knows this person except the parents. To other people it may seem that they are grieving over the loss of a non-person because they feel a parent did not have the time to get to know the baby's personality and character. They will soon forget the baby's impact on its parents' lives while the parents themselves will continue to remember.

It is important to recall that fathers experience the same sense and intensity of grief as mothers. While the mother's relationship is special in that she bore the child, the sense of loss and grief is also deeply felt by fathers. Parents should have a memory of their baby, some keepsake to remind them; a photograph, a baby's identification bracelet, a baptismal certificate if the baby was baptised, or some other memento. It is important, too, that the baby is named so parents can use a name to talk about their baby to others. It will thus be easier to refer to him or her in discussions with their other children and easier to connect memories to the baby if he or she is referred to by name. A birth certificate is the most tangible and legal evidence of the existence of a baby's life and it is welcome that this will now be available to parents of stillborn babies.

I commend the Minister for bringing the Bill before the House.

Mrs. McGennis

I too want to thank the Minister for initiating this legislation in this House. This particular Minister has a very good record in that respect and has had very positive results from legislation which he initiated here. In thanking him I know that I speak on behalf of bereaved parents and the Irish Stillbirths and Neonatal Deaths Society who have been campaigning for such a register for almost ten years. When one is not affected it is easy to overlook the necessity for legislation such as this.

My one experience of this subject was during the 1992 election campaign when a large number of issues were being raised and my party was getting a lot of hassle on the doorsteps. When a canvasser knocked on one particular door the person asked to speak to me. I thought it was because she wanted to make her views known to me on one of the issues which were current in Dublin North at the time, but it was not. She told me she had a friend who had just lost her baby having suffered a stillbirth and explained the trauma and grief the parents were experiencing. She pointed out that there was no such thing as a stillbirths' register and asked me what I could do about it. Having three healthy children I considered myself lucky and was thankful I had not been personally affected. I promised the woman that, regardless of the outcome of the election, I would pursue the matter, and I am glad I did. After the election I wrote to the Minister, Deputy Taylor, who informed me that he was going to introduce such a register.

Subsequently, I met with the ISANDS group. They were pleased if somewhat cynical because they had received such commitments before. For ten years they had been told it would be done. The Minister, Deputy Taylor, has taken a different approach from that of other Ministers who previously had responsibility for this matter. This register was to be established in the context of a general review of the registration of births and marriages and that is why it was left on the long finger. The Minister took it out of the general review. He met with me, a number of other politicians and ISANDS and gave a commitment that he would deal with the register as a separate issue and would do so as speedily as possible. The Minister is to be congratulated for being faithful to his word. I understand that he had an official of his Department working full time on the matter.

The Minister has produced the best possible legislation for this area. It is seldom that we see legislation that is retrospective and which gives such a generous allowance of time in relation to the retrospection. The society and parents who are affected by this will welcome the legislation. The reduction of the gestational period from 28 to 24 weeks is welcome. A woman who is six months pregnant is readily noticeable. It seems ridiculous to suggest at that stage that there is not a viable life and to insist on the gestation period being four weeks more. That is a welcome and compassionate provision as is the provision regarding the weight threshold of 500 grammes.

The Minister met with this group and was strenuously lobbied by its members. His speech demonstrates that he has a great grasp of what this legislation means to the parents and the society affected by stillbirth. As he said:

An important facet of the process of coming to terms with, or adapting to, any loss involves recognition and acknowledgement of the person who has died.

The double trauma which parents must have felt on, first, losing their baby and, second, having absolutely no recognition of the fact that the life had existed and died, must have been almost too much for any human being to bear.

I do not think anybody could find a flaw in this legislation. It is compassionate and the manner in which the Minister has introduced it shows that he is caring and compassionate. I welcome the Bill. The remarks of a member of ISANDS to whom I spoke earlier probably speaks volumes. She said the fact that the Minister was as good as his word and had introduced the legislation which encompassed and improved on everything being sought by the ISANDS group had restored her faith in politicians. If it did nothing else, it was worthwhile for that.

Dr. Henry

I welcome the Minister and I warmly welcome this Bill. It will not only bring some comfort to those parents whose children are stillborn by the legal recognition of their birth by the State but it is also of great importance to the medical profession because it will give us the more accurate statistics which we need. It will also encourage research into stillbirths and the causes of miscarriage.

I have one quibble with the Bill. The Minister should amend section 1 so that the legal and medical definitions of stillbirth are the same. Since 1988 we have defined stillbirth in our perinatal statistics in accordance with the World Health Organisation recommendation, which is that the definition for singleton children is those weighing 500 grammes or more who show no signs of life. The official perinatal report of the Department of Health states: "Following WHO guidelines a stillbirth in this report refers to the death of a foetus weighing at least 500 grammes".

The gestational age, as the Minister has implied, is not an accurate means of assessing the extent of the pregnancy. I understand that the Minister is trying to deal with the emotional turmoil of parents. The emotional turmoil at 23 weeks and 24 weeks — shortly viability may be at 23 weeks — will be as difficult to deal with as dealing with the turmoil of 500 grammes. At present, because of the increase in viability or the drop in the number of weeks at which a child can become viable, the World Health Organisation is considering it possible to drop the definition to 400 grammes. There will always be hard cases on either side. I would have preferred the Minister to have taken the World Health Organisation's definition, which is already used by the Department of Health, rather than having a situation where we could have medical and legal definitions in conflict.

There has been a major drop in the fertility rate in this country. Women in the early 1990s have an average of 2.2 children in their completed families compared to the early 1970s when the average was 4.1. This declining fertility rate, which is a controlled decline due to the availability of contraception in this country, is incredible. It is unknown in the western world since World War II. While there has been a considerable decline in the fertility rate, there has not been so great a decline in the absolute birth rate. The absolute birth rate in the early 1970s was about 70,000 live births whereas it is now about 50,000 live births. Although there has been a big drop in the fertility rate, the medical profession and the obstetric units do not have to deal with such a huge decline in the number of children being born.

There are huge economic and social implications in these changes not only for parents but also for society. The planning of the family has meant that there is additional grief over this much longed for child who is lost. Stillbirth, as Senator Neville said, is just as traumatic for the father as for the mother. Indeed, it is extremely traumatic for the extended family. It is also traumatic for those in the medical and nursing profession who are involved in the birth. Everyone wants to know what happened, what went wrong, why was the child not born well and alive because in a large number of cases the child can look perfectly normal.

We are very fortunate in Dublin in that the three maternity hospitals, where about 20,000 of the births in this country take place each year, have a very high autopsy rate. This procedure is sought as much by the parents as by the medical practitioners involved in the cases because the parents also want to find out the cause of death. It can be a great comfort to them if they find out that, although the child looked perfectly normal there was some serious heart abnormality or other complaint which was not sustainable with life outside the womb. It can also be a help if they find that, for example, it was another medical condition like utero placental insufficiency, which is the failure of the placenta through which the child is nurtured in the womb, or the presence of an infection in the child or the presence of an infection in the placenta. It is a source of great relief to parents to find out what went wrong.

The general availability of foetal assessment has been extremely important. Foetal assessment is the study of the growth of the infant within the womb by ultrasound scans. It helps to alert the doctor if there is growth retardation so that something urgent can be done to induce the pregnancy before term or to do a caesarean section if it is an emergency. However, between 40 and 50 per cent of stillbirths are unexpected and we still do not know their cause.

There are about 500 perinatal deaths in Ireland each year. These are deaths of infants weighing 500 grammes or more who are born without any evidence of life or who do not breathe or who die within the first week after delivery. As the Minister said, between 300 and 400 of these are stillbirths. The stillbirth rate is calculated by multiplying the number of stillbirths by 1,000 and dividing it by the total number of live and stillbirths. I am sorry for quoting so many statistics but I hope the next section of my contribution will make the point.

What is important is that there are some sad social statistics behind the stillbirth rate. These are available in the perinatal statistics published by the Department of Health and I would like to point out the following in particular. The stillbirth rate among unemployed people is 17.7 while the rate among those in professional groups or salaried employees is about a third of that at 3 to 5; there is also a high rate of about 12 among unskilled manual workers. I wonder how many children have been stillborn in this country in the last few years because their parents were unemployed. The stillbirth rate also increases if mothers have had previous stillbirths. Why are more male children stillborn than female children? There are many factors which need to be investigated and we should not rely totally on international research in these areas because some of these situations may be peculiar to us.

Our perinatal mortality rate which, as I said, includes the stillbirth rate, is at the higher end of the scale in the European Union, with Greece, Portugal and Italy. We should be careful about attributing this to our lack of therapeutic abortion. Some people go to England for therapeutic abortions. However, we would be wise to focus on the socio-economic factors which may be involved. Perhaps improvements in our terrible unemployment figures would do more for our stillbirth rate than any medical advances.

I have spoken about stillborn children who look perfectly normal but I would now like to concentrate on children who are seriously malformed. Many cases of seriously malformed children are ill explained and there is little serious research being done in this area. There are children who are born with amputations, with head and torso malformations due to a condition called amniotic band syndrome, anencephalic children, etc. Progress is being made in finding the causes of these cases. For example, the instance of anencephaly here, which was the highest in the world, is falling. Vitamin deficiency in the mother's diet was probably important in this regard and this is why I say that it is important that we look at our own conditions and not rely totally on international statistics. In some cases there may be an inherited biological propensity to a malformation but nothing goes wrong except that certain other circumstances come into play, such as an infection or a dietary deficiency, which would promote the malformation.

Quite by coincidence, in this evening's Evening Herald there is a report on just such a situation. There is a report about surveys carried out by Doctor Patricia Sheehan who is a nuclear medical specialist. I will quote from the report because it is concise. It reads:

[Dr. Sheehan's] alarming findings come as the British authorities are locked in a furious row over the startup of the new THORP nuclear re-processing plant at Sellafield — just 75 miles from the Irish east coast.

Dr. Sheehan's report refers to mothers who attended St. Vincent's school in the town [this was in Dundalk] and shows a similar pattern to the previous study of former pupils of St. Louis school. [Senators may remember this study which she did about ten years ago.] The two surveys centred on girls who were at school at the two institutions in the 1950s. The new report studied 319 girls who attended St. Vincent's Secondary School. It showed that five of them gave birth to Down's Syndrome babies and 33 more babies were born with other serious handicaps, including Spina Bifida, heart defects and deafness.

Five mothers had stillbirths, seven babies died within six weeks of being born and six others died in childhood. Among the 1,086 pregnancies of the 319 women surveyed there were also 161 miscarriages and 23 premature births. ...Dr. Sheehan believes they are linked to radiation from Sellafield.

Her previous study of 157 mothers who attended St. Louis Secondary School in Dundalk showed they had eight Down's Syndrome babies and 12 other babies with birth defects. Two of the mothers had stillbirths, one baby died within six weeks of being born and two others died in childhood. All of the mothers at the St. Louis School suffered a severe flu at the same time as a nuclear reactor at Sellafield went on fire sending a cloud of radiation across the Irish sea.

Dr. Sheehan is linking the radioactive cloud from the nuclear fire to a whole range of birth defects in the Co. Louth town. She told the Evening Herald that the new survey re-affirmed her previous theory of a possible link between the births and Sellafield. Dr. Sheehan is basing her views on a host of factors. [This is what I stressed — that multifactorial influences are extremely important and that we have to look at our own situation and not just at evidence from outside the country.] Children in both surveys suffered from a form of Down's Syndrome which is not hereditary but occurs accidentally. [That is important.]

Weather reports showed that the nuclear cloud from the 1957...Sellafield fire crossed the Irish sea and heavy rain washed the radioactive particles into the soil. In Britain the authorities ordered thousands of gallons of milk from farms in a 300 square mile radius of the Sellafield plant to be poured down the drains. They were concerned that the Iodine 131 [that is radioactive iodine] in the atmosphere could come through the food chain and pose a risk to public health. [No warning of this was given in Ireland.]

While we cannot say that this is absolute evidence that the two were correlated, we would have to seriously look at this factor which is specific to this country. This is interesting to doctors, of course, but it can be vital also for parents because they want to know the chance of a bad result in one pregnancy happening in another pregnancy. They will want to know what changes they should make so that they will have a healthy live born child the next time. We should make all efforts to help their expectation for a healthy child and this will involve money. Money needed for research is of primary importance.

Money will also be needed to improve counselling services because nurses and doctors in our hospitals are over-stretched at present and counselling parents takes time, particularly after a traumatic event such as the stillbirth of a baby and even more so if the child is malformed. I would point out that it has been found to be important that the parents should see a child who is malformed. In the past often the mother or father was not allowed to see the child. I have dealt with women who 30 years ago had an anencephalic child and heard them speak wistfully about their distress at never having seen their baby. If a shawl is put around the baby's face and the baby is presented to the parents in a humane manner it is most important for them. Otherwise they will have a sense of grieving about something they have never seen.

We will now register stillbirths which is extremely good, but we should also look at the possibility of registering miscarriages. While there are only about 300 to 400 stillbirths every year, there are thousands of miscarriages and these are also traumatic events for the parents and they need to be comforted. They have a tremendous sense of loss and failure.

Debate adjourned.