'A mother's worst fear is that a baby lost will be forgotten'

When Niamh Connolly-Coyne lost her baby daughter Mia before she was born, a fear that others would forget her baby set in. Niamh was pregnant with twins when a scan at five months showed that the heart of one of her babies was not developing as it should.

At 32 weeks pregnant, Niamh and her husband Faron found out that the twin they called Mia had passed away. The pregnancy continued and on April 16, 2015, Niamh gave birth to her baby girls: Emma was a healthy, bouncing baby.

Being plunged into early motherhood with the euphoria of having a new baby as well as the grief at losing a baby was overwhelming. Niamh also had a daughter, Alice (then aged four), at home.

Niamh quickly realised that the State's rules around acknowledgement of her baby girls was different. While Emma, now five, got a birth cert, Mia got a special stillbirth certificate.

This puzzled Niamh and after a bit of digging she realised that only she and her husband could easily access Mia's records. This meant that in the years to come it would be difficult for anyone researching the family history to even know Mia existed.

When the census form was dropped off at the house around the time Emma was a three-month-old, Niamh was upset to learn that nowhere on the form was there a space for Mia to be acknowledged.

When it came to numbering the children, she had given birth to, the form only specified filling in the details of those who were alive. "It upset me a lot that I couldn't include Mia's details. I just felt when I am gone, she will be forgotten. I squeezed her name in on the form and I put in her date of birth," says Niamh.

It was after this painful event that she heard about a public consultation process for the Census Advisory Group. The group was seeking submissions on potential changes to Census 2021. Niamh wrote to the group about her experience and suggested that this could be handled better.

"I wanted an opportunity to write down my baby's name. The worst fear many parents have is that their baby will be forgotten. It's important for future generations that they know there was another baby who came into the world and that Emma has a twin sister," says Niamh.

Following submissions made by Niamh and organisations like A Little Lifetime, a support group for parents of babies who die at or around the time of birth and Féileacáin, which also supports anyone affected by the death of a baby during pregnancy or after, Census 2021 is changing.

For the first time, the next Census will include a time capsule section. This will enable members of the public to write a voluntary and confidential message of their choice which will be securely stored for 100 years.

What it means is that parents who have lost a baby can write a note about their child for future generations and researchers to read. These records will be released in 100 years' time under the Statistics Act 1993.

For Niamh, she will write that Mia was stillborn and her details can be found on a special closed stillbirth register. "I will give them details about where is she buried and tell them that she died from hypoplastic left heart syndrome," she says.

"I will also say that no other relative in my generation or the generation before me had a congenital heart problem but in 100 years' time, there will be more research on this condition and more definite answers about why it occurs in families."

For Niamh, this Census time capsule will be a first step in change for families who have lost a baby. She would also like to see the stillbirth register opened so family members, relatives, future descendants and researchers would be able to access this information. At present, only the parents can access this register and even siblings cannot access it.

However, Niamh says there should be an opt-out clause for bereaved parents who, for whatever reason, choose not to have this information made available.

While Niamh says it should be up to the parents who have lost a baby to choose whether these records should be made available, it shouldn't be the State who deny access to them.

Mary McGrath, chairwoman of A Little Lifetime, says the census in the past caused hurt for a lot of families. But for the first time there is scope for people to talk about their loss.

Marie Cregan, who founded Féileacáin after her baby Liliana passed away the day before she was due to be born in 2006, believes the time capsule is an important first step in acknowledging all the children in a family, but it is only the first step.

The organisation is campaigning for the stillbirth register to be opened and for babies lost through stillbirth to be counted in the Census.

"This will be the first time that many parents will write that they had a baby who died. It might be the first time they see their child's name written down in the State's records. It's hard to explain how much that means," says Marie.

According to Deirdre Pierce-McDonnell, chair of the Miscarriage Association of Ireland, for anyone who has suffered a loss, to have the option to mark their baby's existence down somewhere where it will be seen in the future is so important. And to that end she says the Time capsule is a great start.

She says that while the Miscarriage Association and hospitals do have books of remembrance where people can put an entry in memory of their name, this doesn't mean that future generations will know to look there.

"This is where the time capsule will step in; people can officially record and acknowledge the existence of their precious babies and know that the future generations will see the entry and include these babies as part of their family tree," says Deirdre.

For Siobhán O'Neill-White, the time capsule's role in recognising and acknowledging the babies who didn't make it is hugely important to families. Siobhán, who suffered miscarriage in 2004 and in 2010, says parents who lose a baby through miscarriage are grieving but society often doesn't acknowledge this grief.

"When you have a miscarriage, your grief is very real but it's hard to know how to grieve. Some people think you should just move on.

"Once you are pregnant everything changes. Any kind of acknowledgement of this loss is really important."

For more information on the time capsule visit cso.ie. For INM's dedicated baby loss section, see independent.ie/life/health-wellbeing/baby-loss/

Support groups

⬤ A Little Lifetime Foundation is the voice for bereaved parents and their families across Ireland; their aim is to promote healthy grieving and bring understanding and hope when a baby dies at any stage of pregnancy, during or after birth. alittlelifetime.ie

⬤ Feileacain was formed by a group of bereaved parents to offer support to anyone affected by the death of a baby around the time of birth, and the organisation is now the national charity supporting families. feileacain.ie

Support groups