'No matter how long ago your baby died, they are still your baby'

An Ashbourne mother has recalled the heartbreak of planning her baby daughter's funeral while she was still carrying her, as she encourages families affected by baby loss to attend Féileacáin's annual Summer Remembrance Service.

For Linda Walsh, the memories of 2012 remain vivid.

She was 22 weeks pregnant when she and her husband Ken learned that their unborn daughter Caoimhe had Edwards Syndrome, a life-limiting genetic condition.

Until then, the couple had been looking forward to welcoming their third child.

“Caoimhe was our organic baby,” Linda explained. “We had fertility treatment for our two older daughters (Niamh and Lesley Ann) and had also experienced miscarriages, so we couldn't believe it when I became pregnant naturally.”

The joy of the pregnancy turned to heartbreak when scans revealed serious concerns about Caoimhe's health.

“From that moment, we were no longer planning what cot or pram to buy for our precious baby. Instead, we were planning our baby's funeral while she was still alive and kicking in my tummy. It was surreal, heartbreaking and terrifying. We were thrown into a world of disbelief, fear and so many unknowns.”

Although doctors warned that Caoimhe was unlikely to survive, Linda carried her daughter to full term.

“It wasn't really a decision that we consciously made,” she said. “This was where we were at. I knew she wasn't going to survive, but there was always hope.”

As they prepared for Caoimhe's arrival, Linda and Ken also faced the challenge of protecting their two young daughters, Lesley Ann and Niamh, then aged five and eight, from the full reality of what lay ahead.

“We decided not to tell them too far in advance because they were so young,” Linda said.

“So we were carrying this knowledge while trying to keep life normal around them.”

At the same time, Linda found herself consciously creating memories before Caoimhe was even born.

She wore the same perfume throughout her pregnancy and encouraged her daughters to associate the scent with their baby sister.

“To this day they still say it's Caoimhe's perfume,” she said.

Caoimhe died during delivery on 12th November 2012.

Despite the devastation, Linda treasures the precious time the family had with their daughter following her birth.

Looking back, she says those moments became some of the most important of their lives.

“At that point, every second matters,” she said.

“Every photograph, every cuddle, every memory becomes priceless.”

In the weeks and months leading up to Caoimhe's birth, Linda found support through Féileacáin, the organisation which supports families who experience the loss of a baby during or after pregnancy.

After a cousin told her about the charity, she contacted Féileacáin seeking one of its memory boxes.

The phone call remains etched in her memory.

“When the phone was answered, I was met with the softest, gentlest voice saying hello,” she recalled.

“I froze. I had not yet said the words out loud and suddenly I felt the weight of having to say, 'My baby is going to die'.”

The woman on the other end of the line was Jacinta, one of Féileacáin's founding members.

“She held the silence for me until I eventually got the words out, and I was met with such softness, kindness and compassion.”

When the memory box arrived, one detail in particular stood out.

“Inside there was a beautiful message saying how sorry they were to hear about Caoimhe.

“It was the first time I had seen her name written down by someone else, and those little things really matter.”

As she looked through the box in the days that followed, Linda realised her family was not alone.

“I could see the love that had been put into it. I knew it was something very special.

“I realised there were other families who had gone through this too.”

The keepsakes contained within the box would go on to become treasured reminders of Caoimhe's life.

For Linda, one of the most important aspects of Féileacáin's work is helping families create memories, however brief their time with their baby may be.

Its memory boxes contain carefully chosen keepsakes designed to help parents, siblings and extended family members create lasting connections with babies whose lives were tragically short.

“Having her siblings included and giving them beautiful memories and something tangible to hold onto has meant so much to them, both at the time and still to this day,” Linda said.

Among the items she still treasures are Caoimhe's handprints and footprints.

The hospital also took prints shortly after her birth and, in the weeks following Caoimhe's funeral, her sisters created their own.

“Now, to this day, they can look back and see the tiny size of Caoimhe's handprint and footprint, but they can also see the tiny size of their own hands and feet because they too were so young when their baby sister died.”

Linda also found comfort in a remembrance candle bearing Caoimhe's name.

“I would light her candle and feel that she was sending a little light into my heart and home at a time that felt so dark,” she said.

Months after Caoimhe's death, the Walsh family organised a fundraiser for Féileacáin and raised enough money to provide a cuddle cot to the Rotunda Hospital.

The family later attended a special presentation at the hospital to mark the donation.

Today, cuddle cots are available in maternity units around the country, helping bereaved families spend precious extra time with their babies.

Reflecting on her own experience, Linda believes such supports can make an immeasurable difference.

“We didn't have a cuddle cot for Caoimhe and we had to place ice blocks underneath her,” she explained.

“Having a cuddle cot would definitely have helped.”

Most importantly, she says, Caoimhe was able to come home.

“The most important thing was that Caoimhe was able to come home with us and her sisters were able to meet her.

“She had two amazing sleepovers with us and this helped her sisters to process her death. It also gave them time to create magical memories of Caoimhe which they will hold in their heads and hearts forever.”

Through Féileacáin, Linda also attended workshops and support events with other bereaved parents.

She remembers attending a card-making workshop and finding herself laughing.

“I remember laughing and then feeling guilty for laughing,” she said.

“But being around other parents who understood was so important. You didn't have to explain anything. They just knew.”

More than 12 years later, Caoimhe remains an important part of family life.

The family celebrates her birthday each year and remembers her at Christmas. Her sisters continue to talk about her and relatives often send photographs of butterflies or write her name in the sand while on holiday.

“We still include her in everything. She's no different from our other daughters. She's part of our family.”

Over the years, Linda has also become passionate about ensuring that babies who die are recognised and remembered.

She believes one of the greatest gifts Féileacáin gives bereaved families is permission to speak openly about their babies and keep their memories alive.

“People are often afraid of upsetting you, but your baby is already in your thoughts every day,” she said.

“Say their name. Those little things really matter.”

Linda was recently invited to share Caoimhe's story on Féileacáin's Love Beyond Lifetimes podcast and describes it as a moment she will always treasure.

“For me, being asked to share Caoimhe's life was such a proud mammy moment,” she said.

“I felt so honoured and privileged to be able to do this.

“If even one parent listened and felt less alone, then sharing Caoimhe's story was worth it.”

Now she hopes other families affected by baby loss will find comfort at Féileacáin's Summer Remembrance Service on Saturday 18th July at St Mary's Church, known as The Angels' Church, on Church Street in Dublin.

The annual service, which features music from the Dublin Gospel Choir, welcomes families whose loss was recent as well as those whose babies died many years ago.

“Through Féileacáin, we found a community of support with other bereaved families,” Linda said.

“These services remind people that they are not alone.”

For Linda, that message remains as important today as it was when she first picked up the phone and spoke the words she never imagined she would have to say.

“No matter how long ago your baby died, they are still your baby,” she said.

“And they deserve to be remembered.”

For more information visit

www.feileacain.ie.