Elsie-Rae Williams

Elsie-Rae Eileen Williams 

Born 24th March 2025 and passed away 6th May 2025

We were in Cardiff university hospital Wales NICU 

She was blue lighted there the day after she was born via a planned c section with a lot of complications.

I’d moved into Ronald McDonald along with my 3 other children to be close to her as she was very poorly.

She was fully sedated from birth but had such a little character, she’d pull grumpy faces if she wasn’t happy with something as she couldn’t cry due to her tongue being fused to the roof of her mouth (no upper airway).

She fought for 6 weeks and 1 day & we were very limited but made quite a few memories with her, we were able to have some family photos, a baptism with a few relatives and friends present. We were able to take footprints and handprints. We sang to her and told her stories daily. Myself & the children were able to help with her care (feeding through her tube, tracheostomy changes and ties, nappy changes, bed washes, bedding & clothing changes and a few cwtches!) she had a walk in a pram in Noahs Ark Garden, we sang to her as the sun shone over us. Ty Hafan had made hand and foot casts. The UHW decorated a side room to say goodbye. 

She was diagnosed with a rare severe genetic condition where both myself and her father were carriers of the same gene. SLOS comes in 2 forms, and she had it severely which meant that her life was taken due to no treatment for the condition.

She passed away peacefully on my chest, comfortable and pain free, but the emotions I feel daily are just as painful as the day she had to leave us. My children are quite strong headed and although they’re all grieving differently, they have struggled also. I feel guilty for not knowing how poorly she would be as none of her abnormalities apart from short-long bones and small birth weight were picked up on foetal medicine scans every 2 weeks. I feel guilty for her having to fight for the time she was with us, but it gives me a little comfort knowing that she went peacefully knowing how loved she was. We miss and love her tremendous amounts and there’s not a day/night that goes by where I don’t cry for her. I’m a totally different person; this pain is something else and I wouldn’t want anyone else to go through it. I struggle leaving the house to do ‘normal’ things, I struggle to walk by babies around her age or that resemble her beautiful blonde hair. My life feels like it’s just frozen and the day she passed away, a part of me went with her. There’s a piece of me that is missing and will always be, Elsie-Rae. I can’t remember how we were referred to 2wish but I’m guessing it was UHW, Jo has been our support. I’ve had 6 weeks of counselling which has been hard, reliving days that I wish weren’t true but Jackie my counsellor was amazing and has helped me so much in those 6 sessions. Baby/child loss is not something you can just get past, it destroys you as a person, as a mum. Not being able to save the baby you had needed, my body aches for her every, single day