A survey of parents whose babies were diagnosed with life-limiting conditions has underlined the importance of the support provided by organisations such as Every Life Counts, as most parents reported they felt failed by the maternal healthcare system after receiving what is often a devastating diagnosis.
Parents said that the Every Life Counts network had “carried them” and had “offered support and hope” – describing the service as “crucial” and saying that help “was literally always at the end of the phone”.
The support group – the only one of its kind to offer a full package of “pre-emptive grief support and support after baby is born for a whole range of conditions both in Ireland and elsewhere” – received a gold-star rating from the families it had supported, with 95% of parents giving them the top score of 5 stars.
Vicky Wall said that the survey results reflected the urgent need to continue providing life-affirming support, advice and contact for parents when a baby’s life might be very short.
“You feel your baby kicking and moving and you desperately want to know how to pour a lifetime of love into that short life, so Every Life Counts help you do that.” she said.
“We provide peer-to-peer support, scientifically accurate information, memory-making, advice, and much more,” she said. “But our first priority is to make sure you know that you and your baby are loved, supported and valued – and that we are here for you.”
While only 37% of parents felt supported by the hospital or healthcare system, the positivity towards the support provided by Every Life Counts was overwhelming.
“Thank you, thank you, thank you” one mother wrote, with another saying the group had been a “saviour” for her.
“You went above and beyond and carried me through the worst time of my life, and I will be forever grateful,” said one mother.
“Thank you so much for all you do for raising awareness and offering support and hope in such difficult situations,” another mother wrote. “I would be lost without this group. So supportive and sensitive. I never feel like I’m a burden,” one mother who had lost her precious baby said.
Life-limiting conditions, such as anencephaly and Trisomy 13 and 18, usually mean that baby will not live for long after birth, though some of the families in Every Life Counts have seen children live for years with severe conditions, and the organisation says that life expectancy for many conditions are now known to be longer than previously expected, even though baby’s life might be measured in months rather than years.
All of the families supported by Every Life Counts felt that the organisation had helped them deal with the death of their baby or with the aftermath of a difficult diagnosis.
Vicky with baby Hope
More than 95% of those surveyed felt the organisation had helped them deal with “feelings of isolation” and “dealing with grief and loss”.
The survey was carried out by the support group who wanted “to understand if we were helping in a real and significant way, and if there are areas where we can do better,” Ms Wall said.
Many of those surveyed paid tribute to the peer-to-peer network support facilitated by Every Life Counts and to the work done by Vicky Wall in keeping contact and providing ongoing support to mothers and fathers who may be shocked and distressed by an unfamiliar diagnosis.
“I love how Vicky checks in, I don’t attend any groups etc and am not the kind of person that would ring one for help. Her messages mean so much and I want to say a massive thank you,” one mother said.
“Sometimes people are already pregnant in a difficult situation, or feel the consultant isn’t listening, and sometimes they ask if we can accompany them to appointments or help with a Birth plan,” said Ms Wall.
“Then there’s the very sad reality of planning a funeral too, for a tiny baby, and finding tiny clothes, and we are so lucky to have volunteers who do so much great work knitting little hats or sewing tiny precious gowns for these beautiful babies.
“All that helps to wrap babies – and their parents – in our love and make them feel loved and valued. It’s very important,” she explained.
She said that some of the feedback from experiences in the healthcare system showed that there was “much to be done.”
Only a third of parents felt that the news that their baby had a life-limiting condition was broken to them “sensitively or very sensitively”. Some were told their baby might not live over a phone call, while one mother said the news was broken to her by a “smiling consultant” with a “crowd behind her “.
Another mother said that while the doctor was kind, the condition was not explained properly to them and they were made to feel that her baby “had no limbs or fingers or toes – but he did, though they were short”.
Christening gowns made by supporters from their wedding dresses
Vicky Wall says that “the lack of factual information has always been a big problem, something I realised myself when I was expecting my own daughter Líadán, who had Trisomy 18.”
“Parents are frantically googling the scraps of information they’ve managed to retain and coming across horrendous and misleading information
“The good news is that Every Life Counts has made some real progress in this area, and we now have a whole of beautifully produced, fully researched, factual, information booklets on the conditions that arise in pregnancy where baby may not live for long after birth.”
“We asked medical professionals, experts in the field, to guide us with writing these booklets, and we are so glad to have them at such a high standard now,” she said.
“The booklets are in constant demand from midwives and other medical professionals – and we now have bereavement midwives who are just so understanding and experienced, and that’s a big step forward,” Ms Wall said.
85% of the parents surveyed by Every Life Counts had never heard of the condition with which their baby was diagnosed before receiving the news after a scan or test, which they said added to the shock.
“The media’s focus on these conditions is to call these babies “fatal” and “abnormal” and that has really led to a lot of misinformation,” Ms Wall said. “These babies are precious and loved, and their families need facts, not sound-bites and their babies’ lives dismissed.”
Every Life Counts has a variety of leaflets to answer all your questions
Similarly, 84% of parents surveyed felt that baby loss was not openly talked about. “I feel people don’t know what to say or how to approach the subject,” one mother said, and other responses added that this included genuinely supportive family and friends.
One mother said that her little daughter who lived for 9 love-filled days after birth had helped her family to “move forward in hope”, and that she knew “people did their best to support us”.
But some parents said that they felt they couldn’t talk to others about their baby, or celebrate milestones like birthdays as people found it “weird”. And one mum said: “Brilliant support from some, absolutely none from others and actually made the journey harder with hurtful comments.”
“Sometimes people don’t realise they are being hurtful,” Vicky Wall said, “but there’s also the mistaken belief that we mums and dads who have lost their baby after such a short life don’t want to talk about our babies – and we do! We’re the same as any parent, we’re proud of them, we remember their smell, how they felt in our arms, how much we loved them. We don’t want to forget that, so we love it when people ask questions and remember our children, just as you’d do for any child.”
The survey heard from parents who said that they wished for an understanding that “with a loss so big it never goes away and sometimes it hurts a lot and sometimes it’s ok. And there is an avalanche of emotions that don’t disappear.”
One of Every Life Counts Memory boxes
“Mention my baby and talk about her,” wrote one mother. “Let me grieve at my own pace,” said another.
One mum said she was upset that people mentioned abortion to her as her option, and said “at least you have your living children” – while others advised those who wanted to help: “Allow me to express myself and celebrate milestones and .. still congratulate me even though my baby was sick.”
Parents urged people to try to get a better understanding of what to do and say, including “expressing how precious [my] baby was” and being patient.
Ms Wall said that she felt that awareness was slowly building but that more work was needed to create a better understanding.
“We send memory boxes and care packages to parents which helps them to record footprints and a diary and photos and other memories of the baby’s life, both before and after birth.”
The survey found that the memory boxes had a profound and lasting effect on the families who received them.
“Full of love and thoughts. It made me feel our baby was unique and very special regardless of a diagnosis,” said one family.
“Lovely items to make memories with my baby,” said another family, while one mother said it made them feel her baby is “treasured for ever.”
“It was amazing. The christening gown is one of my most precious items,” and “Thoughtfully and carefully packed items that provide a lifetime of care,” were other comments.
“It was beautiful and packaged with such love and I still have the box with her name on it, and it holds her treasures. It has pride of place in our home,” one family said.
“Some of our videos sharing these babies’ stories have reached huge audiences, and that’s definitely helping.” she said. “We can all see how precious and loved these babies are.”
The organisation has previously travelled to the United Nations in Geneva to launch a global initiative at to discontinue the use of the dehumanising term ‘incompatible with life’.
Presenting our babies case at the United Nations in Geneva
Every Life Counts wins the prestigous Butterfly award with mum Erin
Wave of Light in Dungarvan
Yvonne and baby Ayla
Joanne and baby Faith with Vicky
Jennifer and Vicky
Anne Keegan, grandmother to Jake, at the office opening in 2022
Karen and Danny McManus, parents to Nathaniel
This piece was first published on Gript.
You can make a difference.DONATE TODAY