My focus with the Diversity in Loss series is not about just ensuring that each type of loss or each type of voice is catered for, as if it was a tick box exercise. It is about ensuring that within each type of loss or each type of voice there is also diversity. For example, to fully ensure that families experiencing termination for medical reasons, or compassionate induction, can access stories that resonate with them, it is important to share as many stories as possible. Each is different after all. Here, Tracey tells us about Willow, her second daughter. There are so many aspects of Tracey’s perspective that I have heard elsewhere and I hope it serves to help people feel less alone and to help others understand what some families feel, think and experience.

Please, welcome Tracey and Willow to the Diversity in Loss series…

We found out we were having a baby in late 2015, a few months after our wedding. Ecstatic doesn’t even begin to cover how I felt. We already had Evelyn who was 5 at the time and our little family was coming together. We had our 20 week scan on 25th January, and while I excitedly asked the sonographer if she could tell whether the baby was a boy or girl, I could tell something was wrong. She just said “I’m sorry, it looks like the baby has spina bifida.”

In that instant my world crashed, and I couldn’t control the crying. I was so loud, I’m sure anyone outside of the scan room would hear me. I didn’t really know much about the condition, if I’m honest, but nobody wants to hear that something isn’t right. We were told that whilst there is the physical element, our baby had water on her brain and what they referred to as ‘lemon shape’. I clearly remember the Dr asking if I still wanted to know the sex – of course I did, this was my baby. She was a girl, and we named her Willow.

More appointments followed over the next couple of weeks and everyone we saw was fantastic and incredibly supportive. But they couldn’t give us any assurances as to how severe her condition would be – with hydrocephalus there was no way of knowing until she was born. There were talks of shunts and operations throughout her life. Nobody could tell us how brain damaged she would be. We had to think of our family as a whole, and how this would affect Evelyn. We made the heartbreaking decision to end the pregnancy, and Willow was born on 7th February. 

It’s a confusing place to be in the baby loss community, I kind of felt like I didn’t really have a ‘place’ or a right to people’s sympathies. A termination for medical reasons (TFMR) can often be met with judgment, and I almost feel like a fraud when I see people sharing their stories, because they didn’t choose to end their babies life, I did. But I’ve put those feelings on myself – I have been met with nothing but support and love. My heartaches just as much as anyone else’s for the life that could’ve been. I grieve every single day. We go the cemetery as a family, and mark the date she was born every year. We think of her in every little thing we do.

We have another little girl now, Eliza who has just turned two. Pregnancy after a loss is the hardest time. You can’t fully enjoy it, it should be a happy time filled with excitement and planning, but, though it sounds silly, I was terrified I would lose her – that I would be punished. There’s also a guilt that you don’t really hear about when a rainbow baby comes along; would that baby be here if I hadn’t lost Willow? We always said we would like two children, so probably not. But I would not be without Eliza, and I often wonder if Willow would’ve looked like her. 

If anyone reading this is going through a similar thing I really hope you know you deserve to feel every emotion, because a loss is a loss and you need to be able to grieve properly, and not feel like you can’t share your story – it’s incredibly cathartic to do so.

For support in relation to antenatal diagnosis and/or termination for medical reasons, please explore the services available from ARC.

2 thoughts on “#DiversityInLoss – A confusing place to be in the baby loss community

  1. Thank you so much for sharing your story. I’m one week post TFMR after we were told that our baby had high NT measurements and 1:11 chance of Edwards and Patau. This was on the back of our first baby, who was born with a severe congenial heart defect. I have been pregnant twice, and been asked if I wanted to terminate, twice. My son is doing brilliantly, but is certainly an outlier in terms of how well he’s doing, compared to other kids with his condition, however, his life is not easy. As painful as the decision was, we had to do what was right for us, our son, and ultimately what was kindest for our daughter, who we named Eliza. I too, feel guilty about the prospect of having another baby, (and what punishment awaits) but also why we gave our son a chance, but not our daughter. The feelings of not “fitting in” with the rest of the baby loss community resonates here too, and, even though it’s early days, it’s something that I want to help change. It really is the taboo within the taboo of baby loss. Thank you again for sharing your story. I have felt utterly alone, but your story has given me much comfort. Lots of love to you and your beautiful family.

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