Oireachtas Joint and Select Committees

Thursday, 16 October 2014

Joint Oireachtas Committee on Health and Children

Coping with Stillbirth Loss: Stillbirth and Neonatal Death Association

9:30 am

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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I welcome everyone to the meeting and remind attendees that mobile phones must be switched to silent or airplane mode as they interfere with the broadcast of proceedings and the work of members of staff. Apologies have been received today from Senator Jillian van Turnhout and Deputies Regina Doherty and Mary Mitchell O'Connor.

This is the first of two parts to today's meeting - it will address the issue of coping with stillbirth loss and, as today is pregnancy and infant loss remembrance day, it is fitting that we focus on this. I welcome to the meeting representatives from Féileacáin, the Stillbirth and Neonatal Death Association of Ireland. Ms Jacinta Murphy is chairperson, Ms Mairie Cregan is training and research officer and Mr. Brian Roche is a founding member. I thank them for being here. The committee also invited to this meeting Ms Ron Smith-Murphy, chairperson of the A Little Lifetime Foundation, an organisation that offers support and information for families facing or coping with the tragedy of stillbirth. Unfortunately she was not able to accept the invitation due to serious illness so I wish her a speedy recovery on behalf of everyone here.

I advise the witnesses that they are protected by absolute privilege in respect of their evidence to this committee. If they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. Only evidence connected with the subject matter of these proceedings is to be given and witnesses are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him or her identifiable.

Members are reminded of the long-standing parliamentary practice to the effect that members should not comment on, criticise or make charges against a person outside the House or an official by name or in such a way as to make him or her identifiable. As this the first of two sessions of a meeting, I propose that this meeting will conclude at 11.15 a.m. to allow for changeover of equipment and staff. Is that agreed? Agreed.

I thank Deputy Sandra McLellan for raising the matter with us, for putting it on our work programme and for her assistance in the organisation of today's meeting. I welcome our witnesses and thank them for attending. We look forward to a very interesting presentation. I hope that they will also find this session helpful and informative.

9:35 am

Mr. Brian Roche:

I thank the committee for its invitation to attend this meeting. I also thank Deputy Sandra McLellan. Over the past three years I have been in and out of Leinster House, so to get to this point is amazing for me. First and foremost, I am a bereaved dad. I want to outline my story to give the committee an insight into my world and why I think that this day is so important and why it should be ratified in Ireland.
In January 2006, we finally got the news that we wanted and had awaited for so long. We had already one child, Lynn, who was then six, just the right age to become a big sister. In February, we had the first scan at 12 weeks. Everything seemed fine but the baby was a bit small so they asked us to come back again in a few weeks. On 13 March, we went for this scan and brought Lynn along with us. After about ten minutes of scanning, we were asked to put Lynn outside. We were told something was not quite right and to come back in an hour to see a specialist.
We were told first that we were having two babies, and in the next breath that they were conjoined, both sharing a single heart. Our world just fell apart. We were told that nothing looked good at this stage and that nature would probably take its course. Due to the rarity of conjoined twins, we were advised not to tell anyone. A week later we got an appointment to see two consultants and were given a bit more detail about our children. They were joined at the upper chest, sharing a single heart and a pair of lungs. The chances of progressing past 16 weeks were very low. However, they continued to grow and after 18 weeks, Liz could finally feel them move. At 20 weeks, we found out that it was two girls. We named them Lucy, twin one on the left, and Ellen, twin two on the right.
By now we had told everyone that Liz was expecting twins. Even though we knew what the outcome was going to be, and the heartbreak that lay ahead, it was still our good news that we had two daughters. These girls were fighters; they were beating all odds and jumping over every hurdle that they came up against. We were up every two weeks for a scan and could not wait to see their tiny heart beating and to see the girls getting bigger and bigger. One week we would be told that fluid was developing around Lucy’s brain, which could be the beginning of the end, but the following week it would be gone. At 22 weeks, Liz had an MRI scan to get more detail and a team from Great Ormond Street hospital in London got involved, but the outcome was still going to be the same.
Once the magical 24 weeks was reached, scans became a weekly event. This was a week we were never supposed to reach. Lucy and Ellen always put on a show for their mum and dad. Even one time you could see Lucy slap her sister in the face. We brought Lynn up a few times and she was delighted to see them move. We told her that they were a bit sick but left it at that. How could we explain the truth to her when we could not grasp it ourselves? Over the next few weeks we continued leading double lives because to the outside world everything was fine but we knew what heartache lay ahead.
As Ellen and Lucy grew bigger, we made our memories of their lives. They used to love dance music on the TV and having a bath, when you could always hear Lynn laughing all over the house at the sight of legs and hands sticking out at all angles. Lucy was always the first to wake and within a few minutes would have her sister awake. They were surpassing all odds and determined to say hello to us. We were told that they might live for five minutes or an hour; we just did not know.
On 3 August, at 33 weeks, the girls decided to say hello to us. They were due to be delivered on 14 August but - as throughout this pregnancy - they did everything their own way. Our girls were born weighing just over 7lb 2oz. Ellen had officially been first but Lucy got her say in too because her hand was on Ellen’s face. We had them christened, then anointed, and 35 minutes later they passed away in their mum and dad's arms. Our girls had lived their lives.
Liz was in hospital for six days. Over those days, Lynn was able to hold her sisters, doing "ring a ring a rosy" on their hands and playing "this little piggy went to the market" with their toes. We took tons of photos. We brought them home in Lynn’s Moses basket and kept them at home for two nights before saying goodbye. Lynn drew pictures for them and we all placed gifts in with them. We had a private Mass at home and then to the graveyard. Lynn released two pink balloons. They were not tied together, but they floated off side-by-side, just as our girls had been for their lives.
Our two girls - even though their lives were so short - showed us so much courage and strength and put up such a fight for life that any parent would be so proud to have them as their daughters. With all the sorrow, they gave us so much joy. Later the following year, we had two subsequent miscarriages but as a couple we were strong and never gave up hope. In November 2008, our daughter Abbie was born.
As a parent, one of the most unimaginable things that can happen is the loss of a child. There are no words to describe that feeling inside and the emptiness one feels. I am a dad to six children, four of whom have passed. In the early stages after losing our daughters in particular, two things had me in a major panic. One was that I would forget them - how they looked, their smell, that sense of holding them. I remember meeting a couple in their late 70s at a remembrance service. It struck me how they comforted each other, remembering their loss from so many years ago. Strangely enough, I got great comfort from that, knowing I would never forget my children, no matter how many years passed. The second was the feeling that we were alone in this journey, even knowing our family and friends were around us. In my mind, this had never happened to anyone else; it was just us. However, 15 October quickly showed us we were not alone. This day and the act of lighting a candle showed us that there was worldwide support for families, which was openly acknowledged by this one simple event. This day allows bereaved parents and families to unite in remembrance of their loved ones and also allows non-family members to show their support.
The benefits of acknowledging 15 October as pregnancy and infant loss remembrance day in Ireland would be far-reaching. It would allow us to come together as a country to celebrate the lives of our children. It would be a platform for breaking the silence on pregnancy loss and the isolation that families feel at the loss of a child. It would also give those who were bereaved many years ago an opportunity to openly express the loss that for so long may never have been dealt with. As a dad, I fully believe things happen to us for a reason and that our children choose us. For that reason alone, I am so proud that I was chosen to be their dad and that they came into our family, albeit too briefly. Getting 15 October designated here in Ireland as pregnancy and infant loss day would be an ever-lasting legacy not alone for our children, but for all other families and their children.
I asked the parents for a quote and they gave me this:

When our little girl died, it was so unexpected and sudden that sometimes it doesn’t feel real. It is so important to us to keep her memory alive, to acknowledge her life, albeit brief, in whatever way we can. Lighting a candle on October 15th means we can keep her memory alive forever and give our little girl the recognition and respect she deserves. It also makes it acceptable for people to talk about the loss of a baby and be supported in that loss.
That was from Paddy and Maria Cahill. Another dad said: "The loss of a child is horrific, but the loss of a baby sometimes feels worse, as if you're confronted by a wall of silence and you feel you are unable to mourn the passing of your child." It is a taboo subject that people do not want to talk about or discuss. The date of 15 October is the only day parents feel they are able to step forward and talk about their beautiful baby. It is a day when it is OK to remember, a day when we can discuss the devastation of losing a baby and the shockingly high number of people it happens to. It has already been passed in the United States, Canada, and in New South Wales in Australia, although they are working to get it passed in all of Australia.
To conclude, I am just an ordinary dad, sitting before the committee, who, because of the loss of his children, is campaigning for something that I truly believe will make a difference not only for the healing process of families, but also for our children, so that they will never be forgotten.

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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I thank Mr. Roche for sharing his personal story. If I may say, he is not just an ordinary dad, he is an extraordinary dad for being here today. Thank you so much.

Ms Mairie Cregan:

I will present on the work of Féileacáin. As well as the campaign Mr. Roche is spearheading to get official recognition for 15 October, we have other campaigns. To explain how Féileacáin started, we were a number of bereaved parents who met through various organisations, including the International Stillbirth Organisation. We noticed a gap in services in Ireland. Everything was changing in our demographic profile - mothers, like myself, were older coming to pregnancy.

My children were in their 20s when I fell pregnant with Liliana as she was an unplanned pregnancy. The day before she was due she died. As Mr. Roche has said, the impact on a family is incredible. The loneliest sight one will ever see is an empty scan. There was very little support when I had Liliana and her brother a year later. The impact on my own family, including birth children, foster children and adopted children - a rainbow family - was immense. As a result we set about setting up Féileacáin to see what other organisations were doing and what other countries were doing to support families.

Féileacáin is big into evidence-based work and wants to see what is and is not working as there are a lot of myths about stillbirth and neonatal death, and about loss in general. We formed in 2009 and registered as a charity in 2010. We were very mindful of the charities legislation that is coming in. There was a lot in the media at the time on how to set up probity of accounts and all that. I remember we had to deconstruct a lot of the language but we did and set up an organisation of which we are very proud.

I will outline the services available from Féileacáin. The main service is the memory box that we offer to all the neonatal and early pregnancy units and maternity hospitals. I have a handout available which states how many have been given out. Last year 800 were handed out and 50 were given to hospitals. This year the number has reached 865 but we do not know what that is about.

There are 500 stillbirths in Ireland every year. The hospitals, we think, are giving the memory boxes to mothers and fathers whose babies have died aged 20 weeks and more, which we welcome. The cut-off categorisation of a stillbirth in many countries is 20 weeks. Féileacáin, as an organisation, hopes that we in Ireland can look at that to see if we can bring down the categorisation of a stillbirth to at least 22 weeks.

I will show the memory box to the committee. As Members can see, it is designed to give parents some bit of comfort at the worst time in their lives. The boxes are given free of charge to the hospitals. Féileacáin receives no funding and is completely funded by its bereaved parents. The main part of the memory box is a blanket which is hand-knitted by our bereaved parents. In a lot of instances when one goes into hospital, one never expects one's baby to die. At least the memory box ensures one has some beautiful garments from Féileacáin in which to wrap one's baby.

There are also two little teddy bears in the box. One teddy bear stays with the baby, the other stays with the parents and they are swapped over just before burial. Many parents have told us that the teddy is the most precious thing they will own for the rest of their lives.

The box also contains a print kit so that parents can take handprints and footprints of their little child. Any of the three members of the delegation present can tell the committee that if our houses went on fire the first thing we would grab are our mementos - the lock of hair and the little things such as the one photograph of our children that we were lucky to get.

There is also a card handmade by the bereaved parents. We make the cards in our workshops. The card allows parents to write a note to their child or record details. There is also a candle included in the box which is a gift from Féileacáin. It is not allowed to be lit in many hospitals but parents can take it home.

A suite of literature is also included in the box which helps to explain how they will feel from the start. When the family opens, the box the first thing they will see is a leaflet on the memory box because we want them to read it. The last thing the bereaved want after their baby has died is a box. When they open the memory box, they will learn that it is from bereaved parents who have been through the same experience. We convey to them that it is from us who know what they are going through. They will find a set of leaflets that will help them through the next weeks and months. There are leaflets explaining port mortems, how to arrange a funeral for a baby, information on the coroner and other things like that.

Féileacáin provides support meetings which are located in 20 centres throughout the country. We hold meetings twice a month in Dublin. One of the meetings provides support for the newly bereaved. We also hold a craft workshop for people who move on in grief. Those come later because people might feel hurt by the new stories of loss which remind them too much of their own story but they want to stay connected to the charity, so we make cards, Christmas cards, leaded glass and other stuff like that at the craft meetings. The workshops are open to anyone affected by the death of a baby so people can bring along their parents or other children.

Féileacáin provides a telephone listening service. We also have online support which is huge at the moment. We have more than 6,500 followers on our Facebook page. We also hold remembrance services in four centres. We hold craft workshops and provide counselling and psychotherapy. We also have an advocacy unit which is a social work service. For example, we can help people to access their files if they gave birth during the 1960s, find out how and where their baby was buried and inform them on how to name their baby.

We also offer training to professionals and students. At the moment we are trying to get our training accepted by An Bord Altranais so that the nurses will get continuing professional development, CPD, points.

We also provide cuddle cots. A unit helps to cool a baby's body so that parents can take their baby home prior to burial, if they need to do so. In Ireland we do burial and bereavement well except for infant burial. In such instances, people do not know what to do. They do not know what to say and do not know whether to have a private funeral. By us offering them the cuddle cot, which is a very discreet unit that cools the little baby's body, it means the baby will get a night at home with his or her family and everyone has memories of the baby. Families can choose what follows, maybe not a wake but something around that.

Our services are parent-led. We have professionals who are parents and bereaved parents as well. That is what we offer.

Research is a huge part of our work. We are heavily involved with the International Stillbirth Alliance. One of our campaigns we hope to scope and maybe launch next year is on why so many babies die of unexplained stillbirth. Babies do not die for no reason. They die for reasons we do not understand. We are part of the National Perinatal Epidemiology Centre and we are the parent representative on its parent network.

We are involved with Patients for Patient Safety Champions. We also help other organisations as well. HIQA and HSE lead programmes come to us for advice.

I know I have very little time left so I will refer to our campaigns. At the moment one can register a stillbirth from 24 weeks or 500g. We hope the register will be open with an opt-out clause for people who do not want their details in the public domain. I will explain the reason behind the initiative. We are not ashamed of our children and wonder why they are hidden in a closed register. In two generations no one will know my two children ever existed because they will be hidden in the register. If my great-grandchildren want to find their family, I want my children, Liliana and James, counted and included.

We are translating our support material into more languages. The Polish version has just been launched and we are looking at translating it into other languages.

Next year we hope to start mapping the cillíní around the country. Teagasc, Macra na Feirme, local history organisations and the ICA have shown great interest in the project so it will not be a very onerous but an interesting one. The project will honour and bring children who were left on the margin of society back into our consciousness.

We also hope there will be an increased awareness among professional staff of reduced foetal movement in late pregnancy. Reduced movement is a red flag indicator that a baby is going to die. There is a myth that babies get quiet before birth and many women have been told a baby calms down before birth. That is not true. International research shows that reduced movement indicates the placenta might be failing and, therefore, needs to be checked out.

9:45 am

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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I thank Ms Cregan.

Ms Jacinta Murphy:

I thank the committee for inviting us here. It is an honour for us, and for our children, to be here today.

We are all the time improving the memory boxes and act on feedback from parents. We do not own the organisation. Féileacáin belongs to the bereaved parents of Ireland.

We are adding a little pot of Vaseline to the memory box because some parents are afraid of their baby. They can put the Vaseline on the baby's lips and that will introduce them to touch and feel their baby.

We used to put a single-use camera in the box but the quality of pictures was not what we hoped and parents did not use them. One of our supporters, a bereaved parent himself, who owns a number of camera shops has kindly donated two highly specified digital cameras to the maternity hospitals. That means digital photographs can be taken, uploaded and returned to the families. There is a small glitch in this new project because we cannot find out who is in charge of the Internet in the hospitals. We need support on the matter.

Ms Mairie Cregan:

We do not know who is in charge of allowing such an initiative to happen. It is a free service, like all Féileacáin services.

Photo of Marc MacSharryMarc MacSharry (Fianna Fail)
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I thank Mr. Roche, Ms Murphy and Ms Cregan for sharing their phenomenal stories with us. It is amazing how ignorant we can be, or certainly I am, of things of which we should be aware.

I will be proposing, as I am sure the rest of the committee would do, that the day be acknowledged as an official day.

What are the costs of running the organisation and from where does Féileacáin get its support? Apart from the acknowledgement of having an official day, what kind of supports should the State, through the HSE or whatever, provide to assist Féileacáin to continue its excellent work? The witnesses also said the organisation is giving out 860 boxes this year and there are 500 stillbirths. What are the other statistics for infant mortality in terms of babies dying shortly after birth or being stillborn?

9:55 am

Photo of Sandra McLellanSandra McLellan (Cork East, Sinn Fein)
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I welcome the representatives from Féileacáin and thank them for their comprehensive presentations. It is a very sensitive and emotional issue that affects many families in the country. I thank Mr. Roche for sharing his personal story, which includes considerable detail. The witnesses also gave an extremely comprehensive presentation which included considerable detail about how baby loss awareness day came about in America, Canada and Australia, which will be very useful to us. The presentation included considerable supporting letters from many organisations, including the Cork University Hospital maternity unit in Cork.

Obviously, through Mr. Roche, I got to know more of what Féileacáin does. I was not aware, however, that it also offers support for survivors of symphysiotomy and support for women whose babies died in mother and baby homes. The presentation is very comprehensive and outlines many of the goals the organisation wants to achieve. I thank the witnesses for bringing in the memory box and opening it up to show us what is inside. It is very emotional here this morning.

I have some questions on the baby loss awareness day. What would it mean to the witnesses to achieve that in Ireland? From where does Féileacáin get its funding? How can it survive and provide all the services it provides? If it did not provide these services, who would do it? I ask the witnesses to go through the cuddle cot again and explain it as I only caught it briefly.

I believe the baby loss awareness day is very important to families because they miss out on all their babies' milestones along the years such as first Holy Communion, first day at school, confirmation, graduation, wedding and grandchildren. It is useful to have that day to mark it. I am sure it is very important to families who have lost babies.

I have a question specifically for Mr. Roche. When he was aware of all this throughout Liz's pregnancy, did they receive bereavement counselling and who provided that?

Photo of Ciara ConwayCiara Conway (Waterford, Labour)
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I thank the witnesses for their presentations. I am very aware of their organisation and know of the great work it does. I have had friends and family members who have, unfortunately, been recipients of memory boxes. I know of some local photographers at home in Dungarvan - the witnesses may be aware of them - who have been very active in supporting the organisation. She does a great amount of work with the public at home to highlight the work it does.

I thank Mr. Roche in particular for sharing his very personal story. I commend him and his family on the work they have done in highlighting the issue.

Deputy McLellan tapped on the issue I was going to focus on. My child, who is now 12, was sick when she was born. One of the most treasured things I had was a Polaroid photograph of her in an incubator because I could not be with her because she was so unwell at the time. It is very important to have those memories and have those photographs available to parents. The witnesses are right in saying we need to find out how we can rectify the situation and make that camera available. She is 12 now, so that was in 2002. The nurses in Waterford Regional Hospital had a Polaroid camera and were taking photographs of sick babies for parents, which is a hugely powerful thing. One particular midwife used to send one up to me every couple of hours because babies change so quickly. I think we need to solve that.

From attending the clinics, we all know the other expectant mothers in our community, and when one sees that mother bring her child to his or her first day at school, of course it is there in one's head. It would be very powerful for those families to have a day. It is not just the couple but also includes the extended family. I attended a Féileacáin service, a Mass, in Cork with a family member. I believe there was a quilt or a memory wall. I cannot remember exactly as it was a couple of years ago. It was a hugely powerful thing for someone who lost a baby a long time ago. It does not go away.

I again thank the witnesses. They mentioned the stillbirth register. I ask them to explain that because I do not believe people are familiar with it. I know a Bill on registrations is going through the House at the moment. Has Féileacáin had any input into that? Do the witnesses have any thoughts on how the stillbirths register is managed?

Photo of John GilroyJohn Gilroy (Labour)
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I thank the witnesses for a very powerful and moving contribution. Is it accurate to say we are only at the beginning of a cultural change when it comes to openness and acknowledgement of pregnancy and infant deaths? I recently spoke to a lady who in the 1970s lost an infant in the first days of life. When the baby died, the baby was taken from the mother and was buried - "discreetly" was the word that was used but "secretly" is probably a better word to use. The mother never saw that child again and was not even offered the opportunity to attend the funeral. She was deeply traumatised by that experience and remains so to this day. Does Féileacáin offer support to people in those circumstances? Do many people approach the organisation from that perspective?

I am not sure if I heard Ms Cregan right. Did she suggest the organisation is carrying some kind of historical research on killings? That is very interesting as it is an area in which I have a particular interest. How far advanced is that project?

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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I call Mr. Roche and Ms Cregan, after which three further members wish to speak.

Mr. Brian Roche:

I really cannot describe what 15 October means. I was on social media last night. Through the loss of my children I have made many friends in Australia, America and throughout the world. There was such a warming sense of comfort from each other as we came to 7 p.m. The International Stillbirth Alliance suggests that at 7 p.m. in each time zone people light a candle and keep it lit for an hour.

In essence, they say there is a virtual lighting of candles around the world. As each hour passed, my friends and I posted photographs of candles and put our children's names up. My Facebook wall was full of candles at one stage last night. It gave comfort to me and to my wife who was looking at it also. We are all on a journey and support is there for each one of us. It was an opportunity for people to acknowledge their children, their names and to show they are and will always be part of the family. The national day on 15 October provides an opportunity for people who were bereaved long ago who never had a chance to openly acknowledge their child or their loss. I know of one woman who lost a child 40 years ago who lit a candle. I met her recently and she said last year was the first time she publicly acknowledged the loss of her child by lighting a candle on 15 October. That is what it means to us. It is cost neutral to run the event. Whatever we do on the day such as balloon releases is for us, the parents. We are not looking for the Government to pay for anything we organise. Coming up on the train this morning I showed my mother photos of two big hotels in Las Vegas that turned the inside of their fires pink and blue in recognition of the day.

A question was asked about counselling. When we were on this journey with our girls, we received counselling from the start. We had counselling throughout the pregnancy. We did not receive bereavement counselling until afterwards. We did not know when they would pass and neither Liz nor I wanted to deal with the loss until it happened. We had to make as many memories as we could for as long as we had them with us. We did get bereavement counselling afterwards and without it we would not have got as far as we are today.

Reference was made to first days at school and birthdays. My then five-year old daughter, Lynn, was starting back to school in high infants in September after we had lost the girls in August. That summer, four of the other mothers were due to have babies. We met the teacher and explained the situation. The teacher called us after Lynn's first day and said that when she asked for news, our daughter was the first girl to put up her hand. She said she had two baby sisters who are gone to heaven. She said she was as proud as punch. Nothing held her back. That showed me we had done a good job. Her sisters are part of her family. Her younger sister, Abbie, is five now and she knows her sisters are part of her family and always will be. They are always spoken about. It is not a taboo subject. Last night, when we were lighting the candles, each of us lit a candle. We lit four candles and we lit one for our friends as well.

10:05 am

Ms Jacinta Murphy:

For me, the loss of awareness is huge because as bereaved parents all we want is for our babies to be acknowledged. We carried them and gave birth to them. They are part of our families and it is priceless for someone to acknowledge our babies. One cannot buy that. Often, people move on and forget and it is hurtful when one’s baby’s name is not mentioned. My daughter Katie is now 20 but I nearly crashed the car when she said to me when she was 16 that she would never be an aunt. I had never thought of the situation from the point of view of a sibling.

I have two Polaroid photographs from Galway. My infant daughter, Sara, died 14 years ago from a chromosome abnormality that was never detected throughout the pregnancy. As soon as I found out I was pregnant, I knew something was wrong. It was a mother’s instinct and I kept saying something was wrong but it was not taken on board. That is one thing we must get across to professionals, namely, the need to start listening to parents. My daughter was born at 38 weeks and lived for just more than a day. The hospital and the community were fantastic but it was the weeks and months later that were so isolating. I would not wish that on anybody. I was sitting at the kitchen table and there was nobody whom I could pick up the phone and ring. I thought I was losing my reason. I remember going around a roundabout and I did not know which exit to get off, but I was afraid to say that. One day I was within inches of digging up my daughter. I was afraid to say that to anyone for about ten years. However, it is something we hear from parents all the time at support meetings and during support phone calls. We provide a facility for parents to tell us what is happening for them. We normalise it and can say that is okay, that is what it is about. I did not receive counselling at the time but I went for personal therapy years later because I was stuck in my grief. It is one of the most traumatic of losses and it is not acknowledged.

Ms Mairie Cregan:

Ms Murphy has described what we now know all about. I used to work in mental health services and I am now an adoption social worker and a lecturer in UCC on this subject. The grieving process is traumatic. One can see fancy names in research books but does not understand it until one has experienced it and one realises that one cannot say what one is thinking for fear of being carted off. At the time when Liliana died I was working on a suicide prevention team but I was thinking that if I could have found a way out without anybody knowing, I would probably have taken it. I notice that a great deal among the women I work with. People do not understand how one can be so attached to a child that never opened his or her eyes. I have reared approximately 45 children though fostering, many of them on a long-term basis. I have two adopted children and six other birth children but the children I think most about are the ones who died. The only people who understand that are people who have gone through it themselves. That is why the baby loss awareness day is huge for us.
My second child got to 16 weeks gestation. He was a perfect little boy but his heart stopped beating for whatever reason. I was 46 at the time so that might have been a factor. He would have been delivered seven years ago today because they were going to bring me in two days early, so it is fortuitous that we are attending today’s meeting.
I hope I have made a note of all the questions as there were a lot of them. Somebody asked me about statistics. Three sets of statistics are available for 2012. The Central Statistics Office figures are not available yet but the ESRI figures have been published. The National Perinatal Epidemiology Centre figures reveal there were 71,755 births from 24 weeks gestation. Of that, there were 304 stillbirths. The total for early neonatal death, which is babies who completed a seventh day of life, was 141, and 40 babies died between seven and 28 days. That is a lot.
A question was asked about funding. All our funding comes from bereaved parents, which is a bit of a conundrum for us. Many people get their memory box and there is a great connection to one’s baby if one is involved with an organisation. After Liliana died, I just wanted to hang around the Erinville maternity hospital, which is the hospital where she was born. People could not understand why I wanted to be there but that was all I had of her. Of course one moves on from that stage in one’s grief, but that is why people are connected to Féileacáin. They want to do something to thank the organisation for the gift, which came from other bereaved parents, but also to feel connected with their baby. When they want to do fund-raising, we ask them if it is too soon. We say they should not put pressure on themselves and that their job is to look after themselves. Many of them tell us they find it a very healing process.
We have one staff member, Ms Jacinta Murphy, and a part-time psychotherapist. I do the social work service one day a week pro bono, and I have two social workers working with me who give of their time free. We have an office that costs us €20,000 a year. The office organises everything; all the support people need to carry out fund-raising and that also includes postage costs and the transport of the memory boxes as well as the cuddle cots, which I will speak about in a moment. We also organise craft days for items made by bereaved parents. They usually put their baby’s name on a plate as well. We also have classes on how to make the crochet and knitted goods for hospitals. I got my second baby back in a Petri dish, whereas now mothers get their baby back in a beautiful garment that has been made by a bereaved parent. All of that is provided for €20,000.
Our memory boxes cost us €40,000 a year. They are €40 each by the time we put everything in them, including Vaseline.

We do the training for free. We come in at approximately €80,000 per year, which we raise ourselves.

Deputy McLellan asked me about the Killeen project. We are getting the local and oral history groups involved as well as Macra na Feirme, Teagasc, the Irish Countrywomen’s Association, ICA, and others. We are trying to get people in involved in the project and there is great interest in it. Everybody knows somebody affected. The Deputy mentioned a baby being "secretly" buried. We would say "furtively" buried. It was as if there was shame and stigma.

Somebody asked about the work we do with the long-ago bereaved. It is significant. They come to us through other people or are referred by professionals they might be seeing through mental health services or community primary care services. Usually, we just chat. Sometimes we help them name their babies. A person might have had a baby in his or her head for years but never named the child. We give them a candle with the baby’s name on it and it takes pride of place in their houses. The candles are hand made by one of our members. The cuddle cot is a device that looks like an ordinary Moses basket but has a cool and very flat sheet that goes under the baby’s blanket and will keep the baby’s core temperature at a level such that the baby can remain with the family for a few days and even up to a couple of weeks, for example if a family member is coming home from Australia.

We are very rarely consulted by outside people who do not know us. Many of the HSE leads come to us because I have been working with Tusla and the HSE and I never shut up about Féileacáin. Officially, we are consulted only now and then. We were not consulted over the Portlaoise report or mentioned in the support section, which is a very significant deficit because we are the biggest stillbirth support organisation in the country. We have not been involved in the register, but we hope to rectify this now that we know about it. Our latest support is for the siblings. Our little teddy bears have a T-shirt printed with, “for my big brother” or “for my big sister”. This is to help the older children in a family to understand what has happened with their little brother or sister. Many families ask advice on how to tell the other children the baby has died. People are expecting a baby and, as they are told, get an angel instead. We will not go into that.

10:15 am

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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Could you elaborate on the stillbirth register issue and the measurement of the gestational age for registration?

Ms Mairie Cregan:

A baby who either weighs more than 500g or was more than 24 weeks in gestation is entitled to a stillbirth registration certificate. This is important because it tells that the baby was born and is acknowledged in the register in Roscommon with all the others. The register is closed and only the parents or grandparents can get a stillbirth certificate. Siblings cannot access the register. We are hoping it will be open, just as the other registers, such as birth and deaths, are. Some of the long-ago bereaved feel they do not want this information in the public domain, so there could be an opt-out clause.

While we do not offer a service for symphysiotomy survivors, people come to us and we are very aware of other specialist groups in the area to which we refer people. One cannot be all things to all people. We help them through the fact that their babies died and their anger around the question whether the operation or the death came first. We always refer on to those who know more than we do. We believe in working with other groups and we have worked with many groups since our formation in 2010.

Photo of Catherine ByrneCatherine Byrne (Dublin South Central, Fine Gael)
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I apologise for having to leave the meeting to take a call. I thank the witnesses for their presentation. As a mother and grandmother, I could feel Mr. Roche’s loss, love and most of all, his compassion for other people in a similar position. I live near the Coombe hospital and there is a mass there every year. Attendance has grown over the years rather than subsiding and more people are coming to the mass who are a long time bereaved. My sister lost her baby more than 40 years ago. He was stillborn. There is a huge sense of loss for the parents, family and extended family. Members of our family and I found it very difficult even to talk to my sister and her husband about their loss. It was not due to a lack of concern but inability to find the niche. Féileacáin has helped people to move into this area and openly talk about a deceased child. Before I left home this morning, I had the privilege of feeding my new granddaughter. She is five weeks old and a beauty and it is difficult to imagine our house without her presence and the love and warmth we all feel for her. She lives in Ashbourne but visits us on occasion, so I am privileged to hold her for a few minutes early in the morning.

Many of my questions have already been asked. Members of my family have lost babies at certain stages of their lives. I often go to Glasnevin with my sister because that is where her little child was buried. If she could replay it, she would have buried her son herself. My mother had twins and lost one of them. The surviving twin, my brother, is 65, and I remember my mother speaking about the deceased baby in the sense that she did not know where he was. At the time it was normal practice that the child would be taken from the parents, and this lived with her up to her own death at the age of 89.

Moving on from any bereavement is a very difficult road, but moving on from the loss of a child, whether the child was 18 weeks, 24 weeks, two days old or any age, is one of the biggest hurdles a parent can go through. It leaves a hole in their lives that they find very difficult. The constant reminder that somebody has entered into one's life, albeit for a short time, leaves that sense of loss. I congratulate the witnesses on their efforts and what they are doing here this morning. It is very important, not only for them but for the hundreds, and probably thousands we do not know about, of parents who are still lost and do not know where they should go. I hope things work out and as a member of the health committee I will support their appeal.

Photo of Dan NevilleDan Neville (Limerick, Fine Gael)
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I, too, welcome the group. I have heard Ms Cregan talking about the organisation previously. Almost 20 years ago, I was very involved in the debate about the register of stillbirths and I learned much about bereavement from international literature. At the time, people did not recognise it as a bereavement. If one compares the bereavement of a stillbirth or an infant death, there is no funeral, sympathy or coffin. People do not line up and sympathise with the parents. They do not meet up with them a week later and tell them how sad they feel for their loss or ask them how they are coping. They do not talk about the child. Up to then, the child did not even have a name. The register gave the child a name, if the mother and father wanted it.

At that time there was a tendency to ignore the fathers in this situation. I hope that has changed. Having read Féileacáin's literature, it has changed. In the past there was an issue around recognising the father as a bereaved parent as well. There was some recognition, albeit very little, of the mother's trauma of bereavement, but that has changed. It is on the continuum of change. I believe as a society we have a long way to go to understand and recognise the death of a child.

My elder brother died at birth. He was born around Christmas and the nurse baptised him quickly and called him Noel. My mother spoke to us about her loss of Noel all through her life. His name is on the family headstone. One can see from my appearance, that this was at a different time. Our family responded in that way to his neonatal death.

Féileacáin has asked that 15 October would be recognised as a remembrance day of Baby Loss Awareness. How does one campaign to have official recognition of 15 October as Baby Loss Awareness Day? What do we as members of this committee need to do to have it recognised? What are the mechanics of the campaign?

10:25 am

Photo of Caoimhghín Ó CaoláinCaoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)
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I join with colleagues in welcoming Mr. Brian Roche, Ms Jacinta Murphy and Ms Mairie Cregan to this meeting. It is very difficult to know how to respond to the witnesses from Féileacáin except to use two simple word, thank you. Their testimonies this morning have impacted not only with the members of the committee but on those watching these proceedings. I hope that through the media that awareness of stillbirth loss will grow across the land. I believe they have achieved that.

Deputy Neville's question is pertinent and I wish to comment on it. It is about showing leadership. Féileacáin has shown unparalleled leadership. I empathise entirely and am fortunate that I have not had the same experience, but that does not mean that it is beyond my comprehension because it is a major concern when we become parents.

I do not think there are mechanics to get official recognition, but it is about the will of people to emulate the example of the witnesses. I have a suggestion, and that is all it is, it may not be feasible or practical, but it would show leadership that could spark off an example across the land. The remembrance day should not only be in the homes of those who have been bereaved in this way, as it is something we could all do. Leinster House is our parliamentary building and with the leadership of the Chairman, who will still be in place as I have no doubt they would not have blown the whistle yet for the off - but I expect it would be close - a single candle could be lit in front of the window in the lobby area. This would be an inexpensive but significant representative gesture. Perhaps the Chairman, the secretariat and the committee could be involved in that exercise on the morning of 15 October. This would be a national statement and I think it is worth considering.

Photo of Fidelma Healy EamesFidelma Healy Eames (Fine Gael)
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This has been the most emotional presentation that I have ever been present for. I am struck by the level of healing that Féileacáin is offering people at a time of grief when, as Deputy Neville said, there is no other outward sign of the acknowledgment of the parents' huge loss.

We do funerals well in Ireland. We go through a process which helps people deal with their bereavement. I see that Féileacáin is trying to offer that acknowledgement to the parents of the stillbirth or neonatal death. Chairman, we have many problems but I think that together we should be able to resolve this one easily. It is about will, as others have said. I would be supportive of the Baby Loss Awareness Day and the remembrance day on 15 October.

I am struck by the numbers of people that Féileacáin helps. It states that 500 babies die around the time of birth every year, and that affects a great many people. This is a very real issue in many people's lives. Féileacáin mentioned that it provides support for the survivors of symphysiotomy. This committee has heard presentations from parents who have received a diagnosis of a foetus with fatal foetal abnormality. I wondered if such parents have come to Féileacáin.

There is a strong lobby growing for perinatal care and the provision of a perinatal hospice, not so much a place but as a way of caring for the pregnant mother, the father and the family with dignity and compassion. What are the views of the witnesses on that because the lobbying is for State support for those parents?

The issue of closed registration was raised. I think we have an opportunity to help on this issue. As Deputy Conway said, the Civil Registration Bill (Amendment) Bill 2014 is going through the Dáil at present. There is a glitch around the closed register for adoption. In 2010, the Adoption Act was passed. Up to that time the parents of a child who was adopted would get a birth certificate from the adopted child's register. However, under the provisions of the Adoption Act 2010, the adoption of the child is now hidden. Let me explain. I am an adoptive parent and the birth certificate of an adopted child since the enactment of the recent Act would look such that the adoptive parent is the natural parent of the child. I and others would not agree with that. The Tánaiste and Minister for Social Protection is putting this aspect out to a consultation process. I think it would be opportune to submit a case to the Minister on the issue of the consultation process for the registration of births and stillbirths. There might be an opening to deal with it in the Bill at present. I am not fully sure but it would be worthwhile to pursue aspect.

I compliment the witnesses from Féileacáin and ask them to respond to some of these questions.

Ms Mairie Cregan:

A question was asked in respect of the parents who have received a diagnosis of foetal abnormality. Féileacáin has no mandate to give advice or travel information and we do not do so. All we do is provide space to listen to the parents. We find that on occasion mothers would feel they are being rushed into a decision but we give them space. We do not judge but we listen. We have no policy on fatal foetal abnormalities. That is our strategy and the reason is that we do not want anybody to come to Féileacáin thinking that we are on one side or another of the debate. Everyone present has a view on termination for medical reasons but probably diametrically opposed views. We do not discuss this issue. We want to give a family member that is coming to Féileacáin the opportunity to speak and be listened to and we will bracket our own views. We are getting more and more people who around the time of the 20 week scan for anomalies find themselves in this awful situation.

This will be a growing issue in the areas of stillbirth and neonatal support. We do not advertise our views so they have a safe place to come. Does this address what the committee member asked?

10:35 am

Photo of Fidelma Healy EamesFidelma Healy Eames (Fine Gael)
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On perinatal matters, I seek answers to the other questions.

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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Ms Cregan will answer questions from all committee members.

Ms Mairie Cregan:

We greatly support the perinatal hospice as this is a growing issue we have come across. This is something that has arisen in international research and we have seen it in our own research. We must educate ourselves more before we comment fully. It is very difficult to watch a child die and we hope that a hospice can be arranged in such circumstances. The job of a clinician is to save the lives of children and we are researching this area at the moment.

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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Have all of the Senator's questions been answered?

Photo of Fidelma Healy EamesFidelma Healy Eames (Fine Gael)
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I raised the issue of registration.

Ms Mairie Cregan:

We will take the Senator's advice on that.

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael)
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I again thank Mr. Brian Roche, Ms Mairie Cregan and Ms Jacinta Murphy for being here, sharing their stories and speaking of the work they do. The committee will reflect upon the testimony it heard and there is a consensus here that we must support global awareness day. We will write to the Committee on Procedure and Privileges to support the proposal of Deputy Ó Caoláin regarding the candle for next year's event. In response to today's meeting, we will discuss the issues of the register and Internet cameras in hospitals at next Thursday's committee meeting. It is important that we work with the witnesses to bring healing and comfort to parents and families. Today has been an extraordinary day - we are not paying pious platitudes. It is heartwarming to see the work of the witnesses and I thank them sincerely.

I acknowledge the presence in the Visitors Gallery of Ms Bridget Roche, Ms Joan Tuthill, Ms Linda Walsh and Ms Miriam McHale and thank them for attending.

The committee will now suspend until 11.30 a.m. when the Minister for Health and the chief medical officer will discuss the Ebola virus.

Sitting suspended at 10.55 a.m. and resumed at 11.30 a.m.