“I want to break the taboo around discussing stillbirth and neonatal death, and make it normal to talk about it,” says Nicola Welsh.
I'm chatting to Nicola in her kitchen at home in Threemiletown, surrounded by all the usual family trappings - photos of her boys, birthday balloons, toys and the family dog. But Nicola carries the invisible scars of neonatal bereavement, and she is dedicated to helping other families who have suffered in the same way. Setting out initially to create a support group for her local Linlithgow community, it snowballed and she now finds herself Chief Executive of SANDS Lothians (Stillbirth and Neonatal Death Society), a charity providing support and services for bereaved families across Edinburgh and the Lothians.
Nicola and her husband Gary discovered during her second pregnancy that their baby had a serious condition called exomphalos. Theo was born and battled through three weeks and four operations. For three weeks they believed he would pull through. But when he passed away, they were left not only obviously bereft but with no support to help them deal with it. “The hospital [Sick Kids in Edinburgh] was phenomenal in what they did to help Theo,” recalls Nicola, “but once you've lost your baby, there is no counselling or obvious supports available via the NHS*. We were left totally alone.”
While her peers were going to new mums and babies groups, Nicola was alone with her toddler and what she describes as feelings of “intense, scary and overwhelming grief” and was desperate for professional help. The community midwife had visited for post natal care, and she was lucky to have some good friends, but Nicola was desperate to meet someone who had had the same experience. “Meeting other bereaved parents helps to validate your feelings,” she says. “It's particularly difficult for parents of stillborn babies as there are no photographs or memories to draw on.” It was nine months until Nicola met someone else who had lost a baby, and she finally started to find some validation of her feelings. “You never heal completely,” she says. “That particular train has gone, and it leaves you standing on the platform waiting for the next train which is one of deep sadness. But you can shape where you want it to go by talking about it.”
After the birth of her third boy, Oscar, Nicola set about in earnest to create a support group for the Linlithgow area. She found out about SANDS Lothians (separate from the UK-wide SANDS charity) which was in existence, but no-one had told Nicola about it and there was no local group. It's been hard work, but today SANDS Lothians is a stand-alone charity employing five people, including two counsellors, and a team of volunteers. Nicola is the Chief Executive.
They offer counselling, befriending and regular family support groups. They provide photo albums for parents to record their brief time with their baby. They can help talk through funeral arrangements with parents. And they work constantly to raise the profile of the charity so that midwives and doctors know to refer people to them.
What advice does Nicola offer for society? “If you know someone who has had a stillborn baby or lost a newborn, don't be afraid to talk about their baby. Always acknowledge the baby, name them and remember them. When you talk to a bereaved parent they may get upset ...but that's because you were brave enough to let them know that you remember. I've been fortunate in having good friends who still drop me a wee card or a text on Theo's birthday every year.” She recognises that in our society people find it difficult to talk about babies who have passed away, but believes this needs to change. “I found a fantastic quote the other day: 'When you say my child's name you are not reminding me that they died. I know they died. What you are reminding me is that they lived, and that is the greatest gift.'”
SANDS Lothians also runs a pregnancy support group for women who become pregnant again after losing a baby. “Another pregnancy is never the same – you never recapture the joyful, hopeful experience. Many women suffer anxiety and need a lot of support such as extra scans and appointments and speaking to other women who have the same anxiety.”
And what about the dads? “It's harder to get them to talk,” says Nicola. “The whole bereavement process impacts them enormously of course, and relationships can suffer too. Couples do come to the counselling together, but the on-going groups are predominantly mums. We're looking at starting a group just for dads.”
When I visited Nicola the family had just had Theo's 7th birthday. I was affected by the very deep impact that his brief life still has on the family. Nicola is always happy to talk about him and passionate about helping others on this journey. It was a pleasure to learn their story and if this article reaches just one family who need help it will have been well worth it.
For more information on the support groups or to get in touch, please contact:
firstname.lastname@example.org or call 0131 622 6263
For more of Theo's story see http://babywelshupdate.blogspot.co.uk/
SANDS Lothians has to fund-raise constantly to ensure that the professional counsellors are available, that they keep the premises and keep the groups running. They rely on individuals, local businesses and organisations. If you can help, they will be delighted to hear from you!
*There is an NHS counselling service but there is a very long waiting list.
First published in Konect March 2016
Author: Helen-Jane Shearer