Elijah’s Story

“We had the chance to do normal family things before our baby passed”

Picture Caption: Elijah Kelly was able to have normal family time thanks to caring staff

For the Kelly family, being outside was a big part of their lifestyle. So when they knew they’d soon be saying goodbye to their baby Elijah, they wanted nothing more than for him to experience fresh air and the outdoors with his loved ones. The rooftop play area and the kind staff from both Saint Mary’s Hospital (where he was treated) and the Play Team at Royal Manchester Children’s Hospital enabled them to do just that. Shortly before he died, Elijah was able to go outside with mum Sam, dad John and sisters Tia and Aria.

“It felt like we’d gone home,” said Sam. “Elijah’s older sisters were able to have the special experience of being outside with him – Aria just wanted to push him on the swings. It was a good day for Aria to be able to play with the other toys on the rooftop. She was crashing her bike into the side of the crib, just as she would have done if she was at home.

“The doctors were able to take a step back, and I just sat outside and soaked up the moments of normality with our family.”

Picture Caption: Elijah with his mummy and daddy

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The gift of outdoor play was so precious as Elijah sadly only lived three-and-half weeks.

Having been born at his local hospital in Cumbria, a smooth pregnancy and birth meant the family were excited to welcome Elijah into the world and take him home. But an hour after he was born, he was struggling to breathe and his heart rate noticeably dropped. He was placed on a machine to help him breathe, but when his condition didn’t improve he was taken to the specalist Neonatal Intensive Care Unit (NICU) at Saint Mary’s.

Just eight hours after being born, Elijah was transferred to Manchester where he was warmly welcomed by staff.

“When everything happens so quickly, you feel scared. You feel terrified,” said John.  “From the second that we walked through the doors the clinical environment felt so daunting but everyone was so wonderful. The people who are there do more than their job.

“I have never experienced care, compassion and love like the team at Manchester gave us. Everybody in the entire experience went above and beyond. I was absolutely amazed, just blown away.”

After a few days Elijah’s condition stabilised, although teams were still unsure of his diagnosis. Scans showed the bottom half of his right lung was missing and that something was in his lung that couldn’t be removed. Working on such a young baby was difficult and medical staff had to assess whether he would survive the tests he so desperately needed. After going ahead, and an agonising wait for results, Sam and John were taken into a side room off the main NICU area. The consultant revealed Elijah had a rare condition known as alveolar proteinosis, characterised by an accumulation of protein compounds on the surface of the lung. These proteins interfere with effective gas exchange and result in difficulty breathing.

After his diagnosis, Elijah started to deteriorate rapidly. His lungs were retaining lots of fluid, from which his body would never recover. The team had to keep him sedated because when he tried to breathe for himself, he was poisoning himself with CO2. As his lungs weren’t working, extra pressure was put on his other organs to function effectively.

John said: “Elijah was in NICU over Father’s Day. The nursing team made me a card and signed it with Elijah’s handprint. They let me cuddle Elijah for the first time on that day. The nurses were so kind, they took so many handprints and footprints which are now all over our home, and they photocopied them so the colour wouldn’t fade.”

Picture Caption: Elijah on the rooftop play area

Sam added: “There were so many moments when the nurses and the consultants would provide us with the most amazing care as well as Elijah. When John was sitting with Elijah, Gareth the consultant would come and sit down next to John, and they would just chat away. The nurses gave me so many cuddles when they knew I needed them. When our little girl Aria was with us, the nurses would play with her. The whole team were just amazing.”

Soon it became apparent that if Elijah continued on his ventilation he would enter cardiac arrest and experience a lot of pain. So the couple made the hardest decision of their lives – to withdraw treatment and let Elijah have any medication necessary to make sure his final moments were painless.

Knowing they would soon be saying goodbye, the family were given access to the rooftop play area at Royal Manchester Children’s Hospital (the hospital adjoins Saint Mary’s) to they could spend some quality time together off the ward.

“We’re outside people, we love the outdoors,” said John. “All any parent wants to do is walk outside with their child. To be able to do that with Elijah was amazing. At one point I just sat on the bench out there and felt so proud to be with my son.”

Sam added: “It was just wonderful to be able to have the family together, which we could only do because we had access to the rooftop space.

“You need your family to help you get through the tough times. For two hours, we were able to feel normal.”

Picture Caption: Elijah with his family outside in the play area

Sadly, Elijah died a short time later on 23rd June 2023. This Christmas he won’t be at home opening presents with his sisters Tia and Aria. And Sam and John won’t have the chance to mark their newborn’s first experience of the festive season by taking photographs by the tree.

But what they can treasure with them is the experience of playing on the rooftop play area that day.

Sam said: “The rooftop is an escape for everyone. Most parents and children [in hospital] are confined to a room. We’d recommend the rooftop space to anyone who has access to it. It was worth everything to give Elijah the experience of fresh air.”

Will you donate to our rooftop play area this Christmas? The area is in need of a makeover and we cannot do it without your help. Please donate whatever you can so we can support more families like Elijah’s.

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