Ahead of Baby Loss Awareness Week (October 9-15) Chief Executive of SANDS Lothians, Nicola Welsh, shares her own heartbreaking story to explain why this independent Scottish charity will always be there for parents during their darkest times…
I had my first son in 2007, Lucas who is now nine. The pregnancy was fine, he was born a little early but perfectly healthy. As many parents, my husband and I didn’t want there to be too much of an age gap between our children and we felt lucky when I fell pregnant again with Theo in 2008. But early on I had a gut feeling that something wasn’t quite right. I wasn’t sure why, perhaps a sixth sense or mother’s intuition, but the doubt was strong enough for me to want to have a private scan ahead of the planned NHS 12-week scan. At the appointment unfortunately my concerns were realised as I was told that they could see a bump in my baby’s tummy and that I should mention this when I went for my scan at the hospital. Although at that time I was told it was far too early to know if there was anything to worry about, I remember coming home feeling even more anxious and counting the days until my 12-week scan. On the day I explained what I had been told and asked could they please look at my baby’s tummy first. I knew it was bad news when the silence in the room seemed to go on forever and I heard the words that no expectant parent wants to hear: ‘This isn’t what I would want to see’.
Every family who has been through this has a point when their story changes, and this was ours. From then onwards I no longer felt like a ‘normal’ pregnant woman. I had a baby with a condition and we had no idea what that meant for his future. The next day we were sent to the Royal Infirmary Hospital in Edinburgh to the team of specialists, who were able to explain that Theo had an exomphalos [a weakness in the abdominal wall where the umbilical cord joins it, which allows the abdominal contents, mainly the bowel and liver, to protrude outside the abdominal cavity where they are contained in a loose sac that surrounds the umbilical cord]. In Theo’s case it was very large so his intestines, liver and stomach were all in a little balloon outside his body. I’m generally a very positive person, but from that point I felt very sad and anxious. However there was never any discussion that Theo wouldn’t survive. The plan was that surgery would take place soon after his birth and instead of attending normal maternity classes, I joined community groups and made contact with other mums who had been through this experience and had babies who had survived. My thinking at the time was that we had so much love and family support, everything would be okay and we would get through this just fine – all of us.
I went into labour at just 31 weeks and Theo was born on January 10, 2009. I had a natural delivery and thankfully he arrived safely, although he had to be taken away to the Royal Hospital for Sick Children immediately which meant I didn’t get to hold him. I couldn’t travel with him straight away so soon after giving birth and my poor husband was really torn emotionally when I insisted he leave me to go with Theo.
Theo went to theatre immediately for a small operation, which was successful, and he was stable during his first week. He would open his eyes and, although he was still too ill to be cuddled, I could at least feel connected to him and that I was caring for him, talking to him. Unfortunately then things took a downward spiral. The surgeon told us that the opening of the exomphalos was closing with the contents outside Theo’s body. They operated successfully once again but after three weeks and three operations in total, the day after Lucas’s birthday, we became the family in that devastating scene when the doctors take you to a quiet room and with sombre faces and voices explain that your child is not going to survive.
It’s important for me to say just how wonderful the staff at RHSC were. They were there caring for our son 24/7 and were amazing to us as a family. But they explained that medically there was nothing more they could do and it was now just a matter of time. I was in total shock but am grateful now that my husband was able to find the strength to thank the staff for everything they had done for Theo. I didn’t want my baby to suffer any more pain and I think this was the thing I clung to as we phoned our Minister, family and friends to tell them the news. One comfort is that we were able to cuddle Theo properly for the first time, hold him close and introduce him to all his family before saying goodbye. It may sound like a strange sentiment, but in that regard we were actually blessed as so many other families don’t get that chance.
After Theo died I received support from the hospital, but once I was home I didn’t feel that I had support in the community. It was suggested that I should go and see my GP, but that didn’t feel right. I wasn’t ill, I was grieving for my baby. No one seemed to signpost me to anywhere and I was desperate to speak to someone who understood. About six months later I spoke to another mum who had been through a similar experience and I found that it really did help. Up until that point I had just felt completely broken. I desperately wanted another child but the thought of the pregnancy was terrifying. I am happy to say though that our son Oscar was born in February 2011. When he was five months old I contacted the hospital to ask if they had a bereavement group and if I could assist in any way. When I discovered that they didn’t, I decided to set up my own baby loss awareness group there. I Googled baby loss charities and stumbled across SANDS Lothians. When I contacted them in Edinburgh I discovered there was nothing in place in West Lothians. The lady running the charity at the time said that she would love me to be involved and get a local support group up and running and it all just started from there.
We’re still a small charity, but unique for a baby loss organisation in that we offer free face-to-face counselling as opposed to remotely via a telephone call. We’re very proud that we have been able to provide 250 free counselling sessions in the last year alone. All our fundraising goes back to the local community and in particular we are keen to provide services and support for dads who can often feel overlooked. Grief felt by men is all too often underestimated. We also fund training for midwives and health professionals to try and make them aware of how difficult that time can be and how they can assist. One of the most important aspects is helping the family with photographs and keepsakes. We can also help with arrangements, a friendly ear, just anything they need really in terms of support. Thankfully there have been many changes in maternity care in Scotland for parents who have suffered the loss of a baby and we will continue to be there for them throughout their entire journey. This October we have just launched our own Wave of Remembrance in our befriending room where anyone can name and write a short message for a little life that was all too brief. It’s a lovely way to come together and share our special memories.”
SANDS Lothians is a registered Scottish Charity that offers support to anyone who has been affected by the death of a baby through miscarriage, stillbirth or soon after birth. Tel: 0131 622 6263 Email email@example.com Visit Sandslothians.org.uk to find out more.