Parents whose unborn babies were diagnosed with a life-limiting condition have described a new support centre opened in Dungarvan, Co Waterford, as a “sanctuary” and a “place of hope and comfort” where families can be supported and informed after receiving a devastating diagnosis that their baby may not live for long after birth.
Those families, along with bereavement midwives and experts working in palliative care and other areas of healthcare, attended a launch of the new centre in Grattan Square in Dungarvan.
Dozens of framed photographs of tiny babies adorn the walls of the centre, with clusters more in frames throughout the rooms – all children whose families have been assisted by Every Life Counts, the national network which was founded to “let love shine through” when parents feel most in need of support, according to spokeswoman Vicky Wall.
Some of the babies lived for just hours or days after birth, or passed away in the womb. Others surprised doctors by living for months or years. They are all “equally precious, equally loved, equally important”, says Ms Wall. “We want to help every parent pour a lifetime of love into their time with their baby, during pregnancy and beyond, and to help them get the support and interventions they need to achieve that.”
Ms Wall described the new, bright and spacious headquarters as a “dream come true” in terms of being able to help families who “feel lost and scared”
“It’s like a sanctuary,” Jennifer McManus, who was there with other families to cut the ribbon on the new centre, said. Her baby son Jake, who was the first child for Jennifer and her husband, died from a life limiting condition. She says that the support Every Life Counts gave her was “endless”, and that the model of care provided is essential for healing.
Karen and Danny Jennings whose son Nathaniel was also diagnosed with a life-limiting condition said that Every Life Counts had helped them “through the most difficult time”. “We would have been lost without them,” Ms Jennings said, “what they did for our babies is amazing.”
“They let us show just how loved our son was, helped us make memories, held us up when we felt we couldn’t go on,” she said.
For Vicky Wall, the motivation is simple: she has walked in their shoes.
“I remember very clearly when we got the diagnosis of Trisomy 18 for our baby girl, Líadán, and it felt so lonely and so scary. After we buried her, there were days I thought there was no light left in the world anymore. I was helped by Every Life Counts and, in turn, I wanted other families to get that crucial, vital support too,” she said.
The Every Life Counts centre provides parents with factual, medically accurate information so they know what to expect after a diagnosis of a life-limiting condition. The booklets are being used by midwives and other medical professionals who first give families the news that their unborn baby has a serious illness.
Midwives dealing with baby loss had high praise for the work of the new centre, with one posting a message of support on Facebook: “Huge congratulations, you are doing amazing work”.
Tiny baby clothes, especially sourced for these often-fragile babies, are displayed on one wall in the centre, along with extra-small, hand-knit hats, bootees and cardigans. There are exquisite christening gowns too, hand-made from wedding or communion dresses, particularly for these very special babies.
“People want to help, they are so kind, they give right from the heart, so that these parents know their baby is valued. It’s really beautiful to see that generosity,” said Ms Wall. “This is a place of safety and hope and love – we want to lift the sadness and distress and give comfort and support,”
“When I was carrying Líadán, it helped me so much to know there were other parents who had been through this, and who we could talk too and relate too,” she said. “So one of the key services we also provide is that support network, it makes a huge difference.”
“We’ve had such an outpouring of solidarity from right around the country, because Every Life Counts helps families all around Ireland, and in England and Scotland and even as far away as the Philippines too” Ms Wall added. “I know from the loss of my own daughter that wrapping these families in love is the best way we can walk this path with them, and help them find healing. ”
Every Life Counts will also fund counselling where it is not available for parents, and now sends families and hospitals their own-design care packages, each individually tailored to the family and baby whose life is all too-short. The care packages include sets to make tiny handprints and footprints, beautiful boxes for a lock of hair, bathing sets, tiny clothes, a diary for baby, therapeutic colouring books, and more.
The guest book and notice boards in the centre are full of messages from women who say the Every Life Service was “amazing” and “life-saving” and that “Vicky was there for us, any time of the day or night.”
Every Life Counts also provides an important platform for families to share their stories, like the beautiful video of Baby Faith Wilson whose short life with anencephaly has been viewed more than 2 million times. “Sharing these stories highlights the beauty and value of these precious but short lives,” said Vicky Wall. “They show us what love is, and how we can heal.”
Part of the support Every Life Counts provides can extend to accompanying a family to hospital appointments or helping to write a care plan or to plan a funeral. Sometimes, it can be about helping parents navigate care for baby after birth.
“At the heart of our mission is the love parents have for these very sick babies, and that we let that become the guide for everything we do,” said Ms Wall. “We’re so pleased that we now have a centre to build and grow the support we can provide to these families and their special babies.”