Sands Lothians stories to give hope to parents

Jacqui Irvine and Dorothy Maitland hold Future Lost, Futures Found, which they hope will help bereaved mums. Picture: Joey Kelly

Jacqui Irvine and Dorothy Maitland hold Future Lost, Futures Found, which they hope will help bereaved mums. Picture: Joey Kelly

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THE clouds are touched with the last rays of a setting sun, the weak beams highlighting the bleakness of the bare trees in the ­distance.

It’s an autumnal photo of a landscape all too familiar at this time of year. The difference though, is that on the front of a new book it’s been printed upside down. The world is on its head.

“That’s exactly how you feel when you’ve lost a child,” says Dorothy Maitland. “The photo was deliberately used that way. It sums up what the book is all about.”

The book, Future Lost, Futures Found, is a publication from the still-birth and neo-natal death ­society Sands Lothians, which aims to give emotional and practical support to parents who feel that they are on their own amid the grief of losing a baby.

“We wanted to share the stories of the parents we’ve helped through the years in the wake of losing a baby,” says Dorothy, the charity’s operations manager. “We thought that in doing so it would help others in the same position. When you lose a child you feel so isolated, so lonely. . . your friends from ante-natal classes have their babies and you don’t. You feel like a social leper and can blame yourself for what has happened.

“It’s so important to know that you’re not alone. That others have gone through exactly the same thing and have got through to the other side. In the early days you don’t think you’ll ever recover but this book shows that you can and you do. That things do get easier.”

The book which will be officially launched tonight runs to 279 pages and has 36 parents’ stories. Its foreword was written by the Royal Infirmary’s consultant neonatologist Ian Laing who credits the charity with creating a new stimulus in the way bereaved parents were dealt with by hospitals back in the 1980s.

Sands Lothians has self-published 250 copies of the book which will be sold through its website. “But we’re hoping to get it on Amazon as it should reach a wide audience,” says Dorothy. “It’s very good quality, we’re very pleased with it. There are a lot of stories in it which are emotional, but ultimately full of hope and it was great that so many mums, dads and grandparents wanted to contribute. One of our bereaved mums Jacqui Irvine supplied all the photos and worked hard on the design. Ultimately, we just hope it helps.”

n Future Lost, Futures Found, priced £20 will be available via www.sands-lothians.org.uk. Here are three ­extracts written by parents

THEO JAMES WELSH by Nicola Welsh

Theo was born on January 10, 2009, at St John’s Hospital in Livingston when Nicola was just 31 weeks pregnant. He was suffering from exomphalos, where the tummy doesn’t close properly and vital organs are on the outside of the body. He lived for three weeks. “Theo was so beautiful. He was very, very blond with little waves and tufts of hair. I saw him so briefly when he was born then he had to urgently go to the Sick Kids and into theatre. I don’t know how he [Gary, her husband] coped. He must have been on autopilot.

“I was home the next day and so began three weeks of visiting him in hospital. I couldn’t hold him. The exomphalos was just so huge and he was so tiny. He responded well after the surgery and for about three days, everyone was really positive and optimistic. Looking back, they had actually thought he would be a stillborn if I had gone full term. . . I would never have met him.

“I just feel so blessed that I got the chance to meet him and that’s why he came early. The first time I cuddled him was when he was going to die.”

Nicola and Gary went to the hospital every day, but ultimately they were told the doctors could do no more to save him. “The grief was so unbearable it was like being eaten from the inside out, as if someone was constantly clawing at me, reminding me – your baby’s going to die. Family members came to say goodbye. We just kept holding him as his breathing became shallow. Theo told us when the time was right, he squeezed my hand so tightly before he died and we knew. I kept telling him it was OK for him to leave, he could go now. I knew when he’d ­finally gone, it was like a passing of him, and it felt like energy passed from him into me. It was like a total impact into my chest. Maybe it was just my heart breaking.

“After the funeral, I got through the weeks and months with great difficulty. You can try and go round grief but really I think the only way is to go through it. Give into it and work through it and don’t force yourself to do anything you don’t feel up to. After I had Oscar [who was born two years after Theo], I felt so much better. I had dealt with my grief and I was ready for him. I also found Sands Lothians’ website. Now I run the Sands group in West Lothian and liaise with staff at St John’s Hospital and by doing this, I am able to help support others and I find it very ­therapeutic.

“It’s a way forward that works for me. Theo’s short life must hold meaning and more good still needs to be done in recognition of him being with us, even if it was for a short time and my work with Sands is a tribute to him.”

SARA BRASH, by Anna Stamp

Sara was stillborn at the Royal Infirmary on September 6, 2005.

“I was seven days overdue when I finally went into labour. By the time we got there [hospital], I’d been in labour for 18 hours. For a long time afterwards, I used to think about that walk across the deserted hospital car park – it was the last time we were happy.

“I began to feel a little concerned as the midwife could only find my heartbeat, but she reassured us that there must be something wrong with the machine and she went off to get another one, then both of the midwives began to act more frantically. Everything seemed to slow down and I remember suddenly being really aware of my surroundings, I looked up and the room was suddenly full of a sea of blue uniformed midwives, about eight of them.

“I remember looking over at Duncan and he was leaning against the wall, holding his head in a really strange way, his hands over his ears as if he was trying to block something out. The next thing I remember was the midwife holding my hand and stroking it, she kept repeating over and over, ‘Anna, do you understand what we’re telling you?’ Her words echoed in my head for years. It was like my brain was treacle and the pieces of the puzzle were coming together incredibly slowly, but as they did, my world collapsed.

“Under the circumstances, the labour was as normal as it could be, but the hopelessness and the thought of not hearing my baby cry at the end was just dreadful. About five hours later, our baby was born. It was such a terrible time.

“After I would lie at night for hours, irrationally thinking about everything and going over and over the events of Sara’s death. I stopped going out and meeting friends and slowly my world became very small. I had buried everything so deep that I could not ask for help. Fortunately, one of my friends, Mands, had been waiting in the wings, watching events and biding her time. At last I opened up and everything came out. Mands phoned the Sands Lothians’ office and told me about the group meetings and I remember thinking, oh no, it will be people sitting around crying, feeling sorry for themselves.

“It made such a huge difference to me. The Sands Lothians’ befriender was the first person who was matter of fact and didn’t just try to comfort me with a well-meaning, ‘there there’. Slowly I could feel things improving. I felt I had been such a coward. There were parents there whose babies had died only weeks before and they would share their stories, speaking so proudly of their babies. Over the months since she died, I had spoken so little about Sara. These days, I feel so much pride in her and can talk about her all day when given the chance.”

MATTHEW DOUGLAS FINDLAY by Corinna Findlay

Matthew was born on July 8 2007 at Edinbugh’s Royal Infirmary when his mum was 35 weeks pregnant. He suffered from Congenital Laryngeal Stenosis, a rare condition where the upper airways don’t develop properly. He lived for 74 minutes.

“There was a sudden rush to get me into theatre for a caesarean section. I was put onto my back and suddenly his little foot came out first. Dougie (her husband) remembers this so clearly but I was oblivious. Our beautiful baby boy was born at 7.24pm and I remember lying there thinking he hasn’t cried, why has he not cried? However, I also remember that he was whisked away to intensive care almost immediately as he was so early.

“Dougie and I had this sixth-sense feeling that something wasn’t right . . an overwhelming feeling of dread. We just sat waiting and hoping we’d see our baby soon.

“Around 8.45pm, the doctor and midwife came in and I could see by their faces that something wasn’t right. Our hearts shattered as we were told that Matthew had died at 8.38pm.

“I found out about Sands Lothians through my doctor a few weeks after Matthew died. Dougie took a while off work because he just couldn’t face going back. Matthew had been our first child and the first grandchild on both sides so there had been a lot on our shoulders and a lot of grief for us both to handle when we lost him.

“In the early days, we both came to Sands for a one to one session and we were then encouraged to come to meetings. Although Dougie’s not been back, I still come nearly every month. I often come home after the meetings and talk with Dougie for hours about the things shared in the group and that helps him too.

“I have just qualified as a befriender for SANDS. I completed the two-day training course so now I can go on to help others. I felt that I’ve had so much support that I wanted to give something back and be able to help others.”