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.