Holly Cairns (Cork South West, Social Democrats)
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I thank the Leas-Cheann Comhairle for including this important issue in today's Topical Issue debate. This is pregnancy and infant loss remembrance month, a time to mark loss in pregnancy or soon after birth. This is an incredibly sensitive matter which represents tragedy and bereavement for thousands of families. Pregnancy loss in the form of miscarriage or stillbirth occurs in up to one quarter of all pregnancies. This loss can have a devastating impact on parents, other children and family members. It is vital that this particular form of grief and isolation is recognised and supported. Last Friday was the global wave of light when candles on monuments and buildings were lit in the colours pink and blue in memory of lost young lives. I know many families and communities across Ireland marked this day by remembering their own loss or showing solidarity with others.

Féileacáin, the Stillbirth and Neonatal Death Association of Ireland, is a volunteer-led organisation that supports families affected by perinatal loss. This year, it launched the Remember Our Names campaign, which is calling for an immediate amendment to section 8 of the Stillbirth Registration Act 1994 to make the stillbirth register public. Under the current Act, only parents can view the details of infants on the stillbirth register. This register was treated differently to others to protect the privacy of families involved. Reading over the Dáil discussion of this topic over 25 years ago, the motivation of the Minister and Deputies at the time was to recognise the intense personal nature of this matter. However, understanding of pregnancy and infant loss has developed since then, and the families directly affected are calling for a change.

Féileacáin’s Remember Our Names campaign highlights that a mandatory sealing of this register hides away the details of their lost infants. Officially, no one besides the parents could find out about them. Féileacáin is requesting that the 1994 Act be amended to allow families to opt out and to allow their babies' names on the public record. It is also rightly suggesting that any records for the period prior to any legislative change would remain private unless requested by bereaved parents.

This is an issue that families feel very strongly about, and I am sure the Minister of State has seen the very personal stories that some bereaved parents have shared as part of the campaign. One of these stories, Liliana’s story, describes the shock and pain of a stillbirth. Her parent details how it is not a tragic event but “a life-long process where you learn to live in a world that has shifted and you no longer know your place in it”. They go on to explain the impact of the mandatory privacy around the stillbirth registry. Again, I quote her parent, who said:

[Liliana’s] siblings, nieces and nephews have no right to know about her - future generations will not be able to include her in our family trees, despite the fact that she has had such a profound impact on her family. I felt it was an insult to her to hide her away like that.

There, they sum up the issue. They illustrate the additional pain that the current system forces on grieving families. The 1994 Act was passed in the best interests of parents and families and in response to the information available at the time. We now understand things differently. Will the Minister of State look into what can be done to amend the law to help families suffering pregnancy and infant loss?

Joe O'Brien (Dublin Fingal, Green Party)
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I join with Deputy Cairns and other Deputies in reflecting on the enormous losses of parents as part of this month's marking of pregnancy and infant loss. I do not think anyone in this House will disagree when I say that a stillbirth must be one of the most traumatic events that parents can experience. My own experience of engaging with parents is that the loss can be overwhelming, long-lasting and, importantly, very difficult to reconcile.

When legislation to establish a stillbirth register was enacted over 25 years ago, this State was 30 years behind Northern Ireland and 40 years behind England and Wales in giving formal State recognition to a stillborn child. The Minister of the day, the late Mervyn Taylor, when introducing the Bill in 1994, outlined his approach to the long-awaited legislation. He explained that his approach was determined by two considerations. The first was to recognise the therapeutic effect that registration might deliver for grieving parents. The second was to create a permanent record akin to the register of births within the civil registration system. While acknowledging the points the Deputy has made in terms of how our understanding has come a long way since then, these two considerations remain as valid today as when the legislation was first enacted.

The recently published eighth report of the national clinical audit on perinatal mortality in Ireland, conducted by the National Perinatal Epidemiology Centre in Cork, provides essential insights into the incidence of stillbirths and perinatal deaths. The centre has the aim of identifying quality improvement initiatives and proposing recommendations for the improvement of care for mothers and babies in Ireland. All 19 Irish maternity units reported anonymised data to the centre. The report details that some 325 deaths occurred in 61,298 births occurring during 2018.

Stillbirths and early neonatal deaths accounted for 270 and 108, respectively, of those 325 deaths. In 2019, 360 deaths arising from 59,574 births were reported, of which stillbirths and early neonatal deaths accounted for 242 and 118, respectively, of the total.

The General Register Office, GRO, is notified of all births that occur. It reports similar data to those I have indicated, stating that between 300 and 350 families are affected each year by loss due to stillbirth and early neonatal deaths. The GRO also observes that due to the voluntary nature of the stillbirth registration process, approximately half of parents select to register the event, perhaps reflecting, in part, the huge loss suffered by parents and their wider family. I encourage parents to register their loss. The stillbirths register can provide a tangible record and acknowledgement of stillborn children. As well as serving as a focus for the memories of bereaved parents, it also has the strength of providing familial linkages for future generations, but only if the records can be accessed.

In her contribution to this debate, Deputy Cairns has conveyed the proposals advanced by advocacy groups that seek legislative change to open the stillbirths register to public access in a way that is similar to the birth, marriage and death registers. The Civil Registration Act 2004 provides that no person other than the Registrar General or a member of staff of the GRO is authorised to search the stillbirths register. The GRO provides whatever assistance it can to enable searches. There are restrictions on providing copies of the information held in the form of a certificate to anyone other than a parent. My colleague, the Minister for Social Protection, Deputy Humphreys, has indicated that she is willing to reassess these restrictions as they are set out in the Act. Given the sensitivities involved, she has stated that we may not go as far as providing full public access, as in the case of the birth register, but that other, less limiting, forms of access may be considered. We should recognise, too, the parents who, for their own reasons, choose not to register.

This discussion is timely given that we are in the month of Pregnancy and Infant Loss Remembrance Day. I welcome the Minister's commitment to open a dialogue on how we can better manage the system of registration. She has asked the GRO to examine the policy and legislative implications involved in making the stillbirths register more open and whether it should be fully open, as with other public registers, as proposed.

Holly Cairns (Cork South West, Social Democrats)
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I thank the Minister of State for his response. For the families involved in this campaign, public registration is a means of recognising their children. It is a relatively minor change in legislative terms but one that can have a major impact. The Minister of State indicated that the Minister, Deputy Humphreys, will look at the matter with a view to change, but perhaps not to the extent I am proposing. It is important to highlight that Féileacáin wants to give parents options for how they register their child, rather than there being a blanket approach. I ask that the Minister consider this suggestion. I implore her to begin the process of changing the law and giving families a system that better reflects their needs. It would be great if the Department would liaise with the voluntary organisations on the move to a changed system.

Given the Minister of State's portfolio, I want to raise a related matter that needs some consideration. Under social protection regulations, mothers of stillborn infants, that is, infants born after 24 weeks of pregnancy, are entitled to maternity leave and maternity benefit. However, those who suffer miscarriage or loss at under 24 weeks of pregnancy are not entitled to anything. This means that two families in similar circumstances may be treated very differently, depending on whether tragedy befell them a few days before or after the 24-week mark. While I understand that regulations sometimes requires a framework such as a sharp divide, the divide, in this instance, does not reflect the reality of pregnancy and infant loss. I urge the Minister of State to look at how this matter can be addressed.

The UK Department of Heath and Social Care committed recently to a strategy of halving the rate of stillbirths and neonatal deaths in England by 2025. Will the Minister of State ask his counterpart in the Department of Health to follow that example or look into what exactly is being done in the UK to achieve its target?

It is important to recognise the work of groups such as Féileacáin and the Miscarriage Association of Ireland, which do incredible work supporting families, as well as the Pregnancy Loss Research Group and the National Perinatal Epidemiology Centre in UCC, which provide vital research in this area.

Joe O'Brien (Dublin Fingal, Green Party)
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I welcome the short debate on this important matter, which has afforded the House the opportunity to mark the month in which Pregnancy and Infant Loss Remembrance Day occurs. We know that 300 to 350 families are affected by stillbirths annually. The Minister, Deputy Humphreys, is also conscious of those parents who register stillbirths on the understanding that the records will not be open to public access. Some formulation should be found to accommodate their needs and wishes.

As I said, the Minister of the day set two aims for the relevant legislation when it was introduced in 1994. The first was to recognise the therapeutic effect that registration might deliver for grieving parents. The second was to create a permanent record akin to the register of births within the civil registration system. The challenge is to ensure these two aims are being addressed in the current manner in which registrations are completed and records accessed. As the legislation stands, access is very restrictive and somewhat out of line with the access allowed for other forms of registration where sensitivities are also engaged. The Minister is committed to engaging with parents and interested parties to see whether a better formulation can be found to address their concerns while also aligning the operation of the stillbirth register with other registers maintained by the GRO. I will take the points the Deputy made about access to maternity leave and benefit to the Minister. I thank her for the opportunity to address this topic.