Roman’s story

Bereaved parents have thanked the hospice that made the “unimaginable bearable” following the death of their baby son. Roman Keys, who suffered severe brain damage as a result of complications during birth, was just 12 days old when he died on 9th October.

After a week in the Neonatal Intensive Care Unit (NICU) at Addenbrooke’s Hospital, in Cambridge, he was transferred to the East Anglia’s Children’s Hospices (EACH) base in Milton.

Parents Demi Little and Jordan Keys, from Witham, had made the heart-breaking decision to remove his breathing tube so he could “pass away comfortably in our arms”.

Roman was only expected to live for another 24 hours. Instead, the family spent five days together and were looked after by the EACH care team at Milton.

“I’d read about hospices being ‘amazing’ but always found that a little strange until now,” said Demi, who also has a two-year-old daughter, Nola.

“From the minute we walked in, we were made to feel so at home and every single person working there was amazing. The nurses couldn’t do enough for us. They made sure we ate, they did our washing, they went shopping for us but never took a penny.

“We could have visitors in any numbers and at any times of the day. There weren’t any restrictions and the care team did so many incredibly kind things.

“When Roman passed away, two nurses were there by our side and they were just amazing. I never believed people could genuinely care for others the way they do.

“They helped us so much and couldn’t do enough. It meant we didn’t have to think about anything other than Roman. People might think that it’s ‘just a job’ to nurses and carers but it’s so much more. They made the unimaginable bearable and loved Roman.

“We were also offered help from psychologists, giving us someone to talk to. I can’t explain the confusion, guilt, anger and sadness that we experienced so it was very beneficial to talk through those feelings. Those conversations will stay with us forever.”

Demi’s labour and delivery were “pretty textbook” and there was no indication anything had gone wrong. They got to Broomfield Hospital, in Chelmsford, at 10.30pm on a Monday night and, with just gas and air and a birthing pool, Roman was born at 1.38am.

“When he was delivered, he was placed on my chest but unresponsive,” added Demi.

“This happened with my daughter so I wasn’t too concerned. We just desperately awaited that cry that never came. Roman was rushed to the resuscitation table where it showed he had a strong heartrate but wasn’t breathing.

“They masked him up, called a code blue and rushed him to the NICU. Jordan and I were waiting in the room that I’d delivered in for three hours until we got to see him again. It felt like days.

“He was covered in tubes, was hooked up to a ventilator and being prepped to be transferred on blue lights to Addenbrooke’s. We overheard the doctors mention that he had been having seizures which was terrifying.

“After undergoing cooling treatment for three days in an attempt to give his brain a chance to recover and hopefully correct some of the damage, he had an MRI which confirmed he had suffered stage three severe Hypoxic Ischaemic Encephalopathy.”

While at Milton, Demi, Jordan and Roman enjoyed music therapy and being in the sensory room, while EACH also helped in terms of memory making with Roman.

They created hand and footprints and the hospice arranged for the Remember My Baby charity to come and photograph Roman.

“We’ll forever be invited to memory events at the hospice and they even arrange sibling days so Nola can be very involved as well,” said Demi.

“They will truly be in our lives forever.”

Published in December 2022

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100). 

 

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

They helped us so much and couldn’t do enough. [...] They made the unimaginable bearable and loved Roman.

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