Baby Loss Awareness Week

October is a month to raise awareness of pregnancy, infant, and baby loss. Ickle Pickles has joined forces with Sand’s Baby Loss Awareness Week to commemorate all babies that have left us all too soon. 

Babyloss is a heartbreaking reality that affects many families. Ickle Pickles gives anyone touched by baby loss a safe and supportive space to share their experiences. 

Twins Kiro and RJ were born in January at 27 weeks + 6 days. Kiro sadly passed away at birth. Their mum Ashleigh recalls that “everything changed from that moment in time: from telling people at my baby shower to no longer buying matching twin sets which was truly and utterly heartbreaking, to sitting at the dinner table with my boyfriend and my son, in the back of my mind thinking, there should be two little boys sat here.”

Julie from Ickle Pickles says "Baby Loss Awareness Week will always bring sadness. I always think about what might have been with our beautiful Harry. He would have been 9 years old and at school with his twin brother Jack.

He was loved from the moment he was conceived and every day that he was in the neonatal unit. He fought bravely for the 19 days of his life. Holding him for the first time before he passed away is something we will treasure. As sad as we feel about the loss, we also feel proud to have had him and loved him. He lives on in Jack, which gives us a constant reminder of how special he is and how he will never be forgotten.

Something I get asked a lot is how I introduce Jack and what I say when others ask me if I have any other children. How do you tell people about such a devastating death?”

Julie asked other parents how they share their grief and introduce a lost baby. Each parent’s journey is different but we hope this will help other parents.

Ashleigh, NICU mum of twins Kiro and RJ

“As my twins are my first children, I will always say ‘I’m a mother of two.’ I will always tell my family & friends that ‘Kiro is always here, he’s just locked in time.’”

Alex, dad of NICU baby Zak

“It's a tricky one and I guess there's no one-size-fits-all approach. For me, I take an honest and open approach explaining the journey and obstacles and achievements in our story. Fran (my wife) refers to us having 4 children: two on earth and two in heaven. The reality is we bore 4 children regardless of the two stillbirths.”

James, NICU Dad to 24 weeker twins Jack and Harry

“There is no rule about how and whether you say it. It depends on the context, the company, what’s being discussed and what’s being asked. I don’t volunteer the information out of the blue unless I think it is appropriate in the context of the conversation. For example, if someone asked me ‘Is Jack your only child, or do you have any other children’, then I would say, Jack had a twin, but his twin died. Where it is natural to do so, it is important to me that people know that Harry was born and was loved but passed away.” 

Claire, mum of NICU twins Clemency and Rafferty and big brother Harrison

“I think it depends on the audience, the situation and how we feel in the moment. 

If I feel strong and the conversation is more than passing the time at the school gates, I will use the surviving twin terminology. I am conscious as Clem gets older, I don’t want her to be defined by Rafferty’s absence; it’s a difficult one to balance as there is always guilt whichever way you go. Ultimately, we have 3 beautiful children but one couldn’t stay.”

Sophia, NICU mum of Frank, Tom and Albert

“I introduce Tom in conversations with other parents. I say we have 3 children: Frank, our eldest, Tom, our second who was sadly stillborn and Albert our NICU hero. It can be hard and definitely something that we have struggled with and still do occasionally. We learnt through trial and error and the help of our counsellor.”

Katrina, mum of NICU twins Laura and Freya

“I don't always say that Laura is a twin, it's a lot to get into. I am relieved to have the opportunity to tell people her story. They used to say Laura was a twin every day on the ward round, first stint at George's - then none of the consultants or registrars ever mentioned it again - whenever we went to Croydon or when we came back to George's. 

The nurses were great, they all took the time to get to know us. Officially they recorded Freya as a miscarriage, which upset me a lot as she arrived after the 24-week cutoff for stillbirth registration. I suppose she was not born if that means arriving alive... or taking a breath. Also, you wouldn't doubt your baby had been born if you had a stillbirth!

I like the surviving twin description.”

Lorraine, NICU mum of Owen and Luna

“I tell people that I have two children. If they press and ask for ages, then I explain about Owen’s NICU journey, his passing, our IVF journey with Luna and our NICU journey with her.” 

Thank you to all our supporters for sharing their advice, helping to start a conversation about baby loss and tackling the taboo that surrounds it.

The opportunity to open up about one's experience can make such an important difference, as this testimony from Julie shows: “Ickle Pickles has not just given me the opportunity to share my experiences of being a mother of premature babies in neonatal care, but also as a mother who has lost a baby. Sharing my story with others has helped me heal and become stronger and I hope will help others to talk more openly about their loss.

Ickle Pickles has made a huge difference to my life. I have made friends from running the monthly coffee mornings, supporting other parents and reuniting with the doctors and nurses, who were our family during our time on the unit.”

Remember you are not alone. Small babies make a BIG difference. Please get in touch today if you would like to share your story or get involved as a NeoHero to help other parents break the silence.

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