How to discuss baby loss with children and siblings.

November is Worldwide Bereaved Siblings Month. I wanted to share my families story in hope it could help someone else. This is something which is so personal and very difficult to write, but it is paramount.


Warning: this blog does include images some individuals may find triggering. They are used to express the story and love felt within it, not to cause pain to anyone reading.




My parents found out they were pregnant with their fifth child in March 2015 and told us the following day. They then decided to tell the rest of the family two days later on Mothers Day. Everyone was so happy and excited, once they had gotten over the initial shock. My parents told us all of the pregnancy very early on. They had longed for a baby for years. Thomas was so excited to have a younger sibling, we all were but in different ways. For me especially, it was more than gaining another sibling. I knew how desperate my mum was for another baby, I understood her crave for it. I also loved the idea of having another little one for Thomas to play with, despite him having 3 siblings already, he was very much like an only child. We would all play with him of course, but it was different, we were all adults. It felt almost like he had 5 parents.


Very early on, my mum experienced some spotting, something which she had never had in any of her other pregnancies. I think we all panicked at that point. My mum had a check-up and everything was fine. It was just blood, the baby and her were both fine. You feel yourself relax at that point. You're being told what you're experiencing is normal, maybe not for your body previously, but it was okay. At that point, you don't think anymore into it. You take whatever you're being told and run with it. I don't know if that because we genuinely believe that, or because that's what we want to hear. But, I honestly don't think we were aware, at this point, of what could potentially be happening.


This is not designed to put any doctors at fault. No one knew at that point what was coming next. It's very hard to prepare yourself when you have no idea. That's what it felt like for me. You don't know how to prepare for something you have never experienced.


In May 2015, at my parents 12 week scan they were told that something wasn't right. The foetus had a lot of complications, this was ultimately diagnosed as Trisomy 18, which is also known as Edwards Syndrome. This is when the foetus has an extra 18 chromosome, having three rather than two. This is when the whole world collapsed for my parents. Although it is the second most common trisomy disorder, after trisomy 21 (Down Syndrome), it is very rare. In the UK roughly one in every 4000 babies are diagnosed with Edwards Syndrome. Most babies who have Trisomy 18 do not make it to full term, of the ones that do over half of them will be stillborn. Of the babies who do survive birth, less than 10% of them make it to their first birthday.


Daisy was born on 5th June 2015 after my parents decided to end the pregnancy. At the time they had 4 living children aged 3, 15, 16 and myself being 17. She was born with multiple complications which would have made it impossible for her to live outside of the womb. My parents made the decision not only to prevent Daisy from further harm but also to protect us four. When she was born was when we all saw the full extent to how ill and affected she actually was.


We were told during the pregnancy that Daisy had mosaic trisomy 18, which is a less severe form as only some of her cells contained the extra chromosome 18, not all of them. Although this doesn't always mean that the babies are less affected. Daisy was very small, she had a heart defect and her bowel was on the outside of her body. She also had clenched fists with difficulty extending her fingers. She had a small head size with the back being prominent from amniotic fluid which ultimately left her with severe brain damage.


She would not have made it to full term.