Sandra describes some big issues that have affected her and her husband Rodney following the deaths of two babies, and their daughter Rebekah gives a unique insight into how she misses her twin sister.

Our first baby, Louise, lived for just thirty-five minutes after she was born.

Some months afterwards, we were over the moon to discover that I was expecting twins, but three weeks later our joy was shattered when we learned that although one twin was developing normally, the second had many abnormalities which were similar to those of Louise. As a result, the rest of the pregnancy was extremely stressful with weekly scans to ensure that both twins were alive. We were told there was a very high risk of all our future babies having the condition. 

Rebekah was born first, a beautiful healthy baby. She was followed by Jayne who was very poorly and lived for just twenty minutes. Although it is a long time ago, when I recall that day I am transported back to the delivery suite with memories so vivid it seems like yesterday. The unreality of having a perfect baby in one incubator and a dead baby in another still gives me a sensation that I can’t describe. Despite knowing that Rebekah needed to be looked after and the importance of bonding properly with her, I experienced feelings of regret at not spending enough time with Jayne when it was so limited.

Some big issues we weren’t prepared for

Having been befrienders with Bereaved Parent Support for a number of years, we have found that the big issues we weren’t prepared for are often echoed by the parents we befriend. It is these issues that can cause the most difficulties in the long term.

  • We were not prepared for how Jayne’s birth was ignored. We received ‘Congratulations’ cards with no mention of Jayne. Rebekah’s birth was announced in church, but Jayne’s birth and subsequent death wasn’t.
  • Because we had one baby at home (and maybe particularly because we had ‘lost’ two babies), people expected that either we wouldn’t feel a sense of grief or that it would be insignificant in the light of our happiness. If we expressed feelings of sadness, some people tried to make us see how blessed we were in having one healthy baby. After only a few months we sensed some irritation from others that we were still sad at times, with the implication that we were ungrateful for what we did have.
  • We were surprised that society views the death of a baby as being less significant and treats it very differently to the death of children who have survived long enough to establish relationships. At the graveside one day, a lady who had suffered the death of a child told me how lucky I was to not to have had my babies long enough to get to know and miss them! We have been blessed with two more children and, whilst we appreciate that the loss of any of our surviving children would be totally devastating, we cannot erase the unknowns we have in relation to our girls.
  • We weren’t prepared for our uncontrolled grief, despite the years that have passed. I don’t want to cry at family gatherings where everyone is happy or at a funeral because something has just triggered a thought or a sad memory. Fortunately, this now happens only occasionally and the sadness passes relatively quickly. Speaking to other parents, we learnt that the fear of these moments and other people’s reactions makes them reluctant to join in family gatherings, which in turn creates further misunderstanding. There are no easy answers to these problems, and not everyone has people close to them who are prepared to listen or try to understand.

We dealt with these experiences by forcing ourselves to carry on with life as normally as possible and to put ourselves in other people’s shoes as much as we could. In the early years this was exhausting and frustrating, but we have persevered and, looking back, it has become easier with time. Despite the challenges we have a very happy life and the girls will always be a cherished part of our family.

Rebekah

Occasionally in conversation among friends, the topic of my being a twin comes up. Often someone will say, ‘Imagine two of you!’ They might picture for a split second what my twin would have been like, but that thought has crossed my mind hundreds, if not thousands of times.

It’s hard to explain how I feel about the death of my twin sister Jayne. I don’t often talk about her, because I have no memories of her. But despite having shared life together for only twenty minutes, Jayne’s death has impacted me more than most people imagine. I remember when I was younger and had been disobedient, thinking, ‘I bet Jayne wouldn’t have done this’, and when I couldn’t do maths thinking, ‘We could have helped each other if she was here.’

I am now twenty-one, and Jayne’s death impacts me differently. I don’t think about her as often as I did when younger, but that’s OK because I know I won’t forget her. She was and is part of my story. I can still get upset, especially on my birthday. What has helped me deal with Jayne’s death is seeing how my parents have done it. I’m grateful for their patience with me when I was young and asked many difficult questions. They showed me photos and listened to me when I was confused and maybe even angry. They have shown me that it’s OK to get upset and to imagine what life would have been like. As I embark on my career, I can’t help but wonder what path in life Jayne would have taken. Would she be working, or would she have travelled?

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