Stories to mark Baby Loss Awareness Week

12 October 2021 - Deanna’s story and Khaled’s poem

Deanna’s story

Koby was born prematurely at just 25 weeks in June 2018, weighing 705g. He was immediately whisked away to the Neonatal Intensive Care Unit (NICU) in an incubator as he needed support to keep him alive. Koby was so tiny and fragile, and had come into the world having to fight for survival.

He spent all his life in hospital: 351 days, 321 days in NICU at King’s College Hospital and then 31 days in PICU. He was cared for by an array of staff who soon became like family and a huge part of Koby’s Journey.

During Koby’s life, there were many challenges; ups, downs, steps forward and step back, but he was one tough cookie and overcame so much. He gave everything, all he had. His strength and willpower to never give up, amazed us.

Heartbreakingly, just two weeks before his first birthday, on 18 May 2019, Koby lost his fight for life. Throughout it all he remained courageous, determined, brave and strong. Koby was Inspirational, a warrior and we are so proud to be his parents. Our wonderful son is loved and missed so much.

Khaled’s poem for baby Arlo

The flickering dance of kindred souls inside subside as one departed
The thoughts that cross my heart form layers of veils of dark that cover the light within it
It spirals down to an abyss where all is dark and all is numb
These thoughts of past and dreams of future send it further and wrap it tighter
That light once flickered dancing now yearning to be rescued
The mind cannot see its heart is lost but it can call it
Say don’t give up the mind says to say. Don’t give up every day. Force it out anyway

Don’t give up until the day you find the light again
That day you see will set them free, until then they wait broken-hearted.