Baby Loss: A retreat to help heal the brokenhearted

"Being able to cry without judgment" and "knowing that you're not alone". 

That's what mattered most to one mother who attended a very special retreat for parents who have lost babies to life-limiting conditions usually diagnosed when baby was in the womb. 

When a life-limiting conditions such as Trisomy 18 or anencephaly is diagnosed for an unborn baby it usually mean that he or she might not live for long after birth, but Every Life Counts, the national support group who organised the retreat, says it's vitally important that  parents are supported to enable them to pour a lifetime of love into that short life - and so that society in general understands that these babies are just as precious and valued and deserving of life as any other child. 

Many of those attending the retreat spoke about the healing they gained, and the "time and space" provided to discuss and share and celebrate their babies, even as they navigate their devastating understanding of what it is to be a bereaved parent.  Another woman said that "just chatting to other mothers knowing it's OK to cry, but also to still be able to laugh" was what she gained. 

   

Vicky Wall of Every Life Counts, who organised the Belfast retreat in response to what she says is a "pressing need", says that the traumatic nature of baby loss is still not well understood, and that most of the hundreds of families she has worked with had difficulty accessing the supports needed at such a devastating time. 

She says the retreats provide bady-needed time to address the impact of bereavement and to untangle the complex grief after the death of a child. 

"I always remember that one mother who had lost her little boy and was finding it very difficult to cope asked if any counselling was available and was told that she had missed her chance for a spot this year, but might get something the following year. It was appalling: we hear a lot about supporting women and about the importance of mental health awareness but it's not matched by actions."

"When you get that diagnosis,  when you are told your baby might not live long after birth, it really feels like the bottom has fallen out of your world," Ms Wall, whose baby girl was diagnosed with Trisomy 18, said. "It happened to us with baby Líadán, and I feel one of her gifts to us was to help shape the mission of Every Life Counts: to help parents let love shine through, and to celebrate every baby, however short that life might be." 

She said that while parents were usually "so very proud of the babies who sometimes fought so hard to come and say hello and goodbye", they often felt that this was misunderstood. 

"People want to be understanding and kind, of course they do, but they often wrongly think that a bereaved mum or dad would rather you didn't talk about their baby that died. So the very natural pride and joy you feel about your baby is overlooked, and then, because people don't want to upset you, the loss isn't discussed either," she said. "But you want to share all those things and feel that your baby is recognised and valued, and also feel that you are allowed to grieve just as you would for any member of the family that has died." 

"So the retreats are centered around giving and receiving support: giving parents a chance to talk through their feelings of baby loss with a group of people who understand it very well because they have been through the same thing," she said. 

The retreat featured art therapy - including locket making and positive memory making - and also included talks from bereaved parents including author Anne Devine. 

"We also arranged the retreat to link in with hospitals as parents that had reached out to us for support feeling a lack of support from the health service," Vicky Wall said. 

One of the mothers attending the retreat said it was very special because of the "bond that develops very quickly with mammies who 'get it'" - adding that it was important to be "able to cry without judgement and not having to pretend you weren't crying!" 

   

   

Others said they felt supported and that Every Life Counts felt like a family. "I can’t nor will I ever be able to thank you for everything you have done and continue to do," one mum said. 

For many parents who've received a very poor diagnosis for baby, the journey can feel very lonely and scary and confusing, Vicky Wall says. Many of the mothers attending the retreat praised Every Life Counts for going "above and beyond", offering peer-to-peer support, being there any time of day or night, travelling long distances to help parents to navigate appointments or be an ally when the healthcare system can feel very adversarial or negative about these sick babies. 

"I loved hearing about everyone's children," one bereaved mother said. " Although you never wish to hear someone has experienced very similar feelings to you, it's reassuring to know your feelings are echoed and validated," added another. 

For most of the parents attending, being able to celebrate their babies was vitally important. "Lots of mums feel that their babies aren't viewed as important, especially after they have died, and it's lovely to give them a space to come together so they can be reassured that their child is so precious and loved," Ms Wall said. 

She pointed to videos released by Every Life Counts where parents shared their stories and reached an audience of millions. 

"People are instinctively kind," she said. "They  want to hear these stories of love and acceptance when they are made available to them. Unfortunately, the media doesn't often seem to want to share the love and joy as well as the tragic loss. They use ugly words like "fatal abnormalities"  which really upset parents. But at these retreats we're affirming the value of every one of these precious babies, and hopefully helping with a bridge to healing." 

One mother wrote afterwards that "To say this was needed is an understatement. ELC has saved me in so many ways. They love and care about [my baby] like he was their own. This retreat has allowed me to sit with my grief, my fears, my troubles and share, not to be judged. Only supported. The care and love put into it allows you to celebrate your baby in the safest of spaces surrounded by the strongest women who share the same pain. I will hold these mums with me forever and their babies. I am so privileged to be part of this group. Vicky, I love you so much thank you for everything.

"It was a privilege to have been here today with all the amazing mammas. I don’t know how we would have survived without Vicky. She has been an angel to all our family," wrote another.

"This was my first retreat with ELC and I came a stranger and left with life-long friends," a third wrote. "The value of being in the same space as other mothers who have been where you are, and are now where you are yet to be is priceless. I am forever grateful for the support offered as I navigate my journey as a bereaved mum. 

Another simply said: 

"Vicky, and ELC saved my life…. Literally. Thank you for not letting me feel alone and supporting me every step of the way."

For one mum, Every Life Counts and the retreat gave her a "rare chance to talk about our boy" - while another added: "A tremendous day of sharing, healing, contribution and immense courage."

Writing afterwards, one woman said: "I'm not sure I've felt genuine support/connection like that before either and I didn't realise that", adding that the trauma of baby loss needed to be acknowledged by the world. 

"That's so important," Vicky Wall said. "The loss is so traumatic and heartbreaking, and the need to have your baby valued and appreciated and protected by the world is huge. We're providing these retreats without any help from the state or the healthcare system but they are so badly needed."