A voice that I find so incredibly powerful, yet rarely heard, is that of an adult sibling to a baby who has died. Having been fortunate enough to bring Leo’s sibling home and be able to nurture him, one question that always sits in the back of our minds is how will Eli process and understand the death of his brother who he never met? In this incredible blog post, Kate shares how the legacy of her brother’s death has been felt in so many ways in her adult life, especially now as she sets out upon starting her own family. I’m so grateful to Kate, and her parents, for allowing us to share Jacob and his story.

Please, welcome Kate and her little brother Jacob to the Diversity in Loss series….

As I write this, I am two weeks into a four week wait to discover whether or not the only embryo from my first IVF cycle is healthy. If it is, fantastic, we can continue with the rollercoaster of wait-hope-disappointment-wait-hope that is IVF. If our little embryo is deemed “not suitable for transfer” then we’ll know that it has the same unbalanced set of chromosomes that meant my middle brother didn’t get to come home from the hospital.

When I was two years old my parents told me that I was going to have a baby brother or sister. I don’t really remember anything about this time, but unfortunately I never got to meet this sibling as my Mum went into labour two months early and the baby, a little boy that they named Jacob, was stillborn. All my parents have to remember him by his a photograph and a file of paperwork.

An autopsy found that Jacob had died because he had an unbalanced chromosomal translocation resulting in partial trisomy 18 (Edward’s syndrome) and other issues. Our whole family were devastated, but when my Grandad had to break the news to nearly-three year old me I apparently thought that, since I was no longer getting a baby to play with, I could have a dog instead. Toddlers are not the most tactful or sensitive.

I don’t remember a time where either of my parents sat me down to tell me about Jacob when I was older, but I have always known about him and what my parents went through. I have to be honest and say that it didn’t trouble me too much as a child; I suppose because I couldn’t remember that time well and because I was too young to truly empathise. 

My parents went on to have several early miscarriages, and then when I was five and a half my younger brother Daniel was born. I remember his birth so clearly – I was staying with my grandparents, eating my tea in their kitchen when my Dad called from the hospital to let everyone know that he had arrived safely. He was born at the same gestation as Jacob so even though by this time they had been able to have some prenatal tests done to show that Daniel would not have the same unbalanced chromosomes, it must have been such a panic to then face a second premature birth. I can still recall the absolute wave of relief that visibly washed over my grandparents faces when they took the call, even though I was too young to comprehend why they had been so worried.

A few years after Daniel’s birth I underwent some genetic testing to see whether I carried the same translocation as my Mum and now Daniel had been found to carry; the one that had resulted in Jacob’s death. Low and behold I was found to have the translocation too, and my parents faced the task of explaining to both their living children that they would face the same risks of heartbreak when they came to have their own families. Again, I can’t remember an exact moment where this news was shared but it became a slightly morbid fascination for me. I enjoyed talking about my “wonky genes” in biology lessons, and did school projects on chromosomal disorders. I applied to study genetics at university in a change from my planned course of midwifery so last minute that it shocked even me. Once there I wrote essays on genetic counselling techniques and even strong-armed my third year tutor into letting me conduct my final honours project on chromosome 18. I spent six months researching, reading academic papers with children like my brother photographed and described from a cool, clinical distance. It often led to me crying into my notepad in the library because with each paper and each family, my own history became more and more real.

Over the last two and a half years I have been trying to get pregnant without success. We are in the incredibly lucky position whereby we’re allowed three rounds of IVF on the NHS because of my translocation, and started our first cycle this summer. It’s been mentally straining in the way that any fertility treatment is, but also because I find myself ruminating on the fact that we only get this treatment because my brother died. I would still have the same mixed up chromosomes if Jacob hadn’t died, but I wouldn’t know about them. I might have suffered several miscarriages before finding out, or I might have waited a few more years before trying for a baby when perhaps it would have been harder still. I might have been the one to have a stillborn child instead of my Mum. Why is it that she had to deal with the trauma of giving birth to a child who had already passed away so that I (hopefully) don’t? Why does anyone have to go through that? Nobody should. I could tie myself in knots trying to balance where I am and what we’re doing with what happened to my parents and Jacob.

When people asked me growing up if I had any brothers or sisters, I always answered that I had one brother. Perhaps we could all, as a family, have felt able to acknowledge Jacob more and maybe I should have been better at regarding myself as having two brothers. I suppose you take the lead from your parents and everyone grieves and handles things in different ways. Now that I’m an adult and longing for children of my own, I am so grateful to the little brother that I didn’t get to meet. His life was short but it was real, and he mattered. Without him, in so many ways, I would not be the woman that I am today.

Thank you, Jacob. I would have loved to have known you.

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