Lexi

Lexi Spicer was “beautiful, spirited and so full of personality.” Last year, shortly after turning 17, Lexi died in hospital.

Lexi was born almost five weeks early with a congenital heart defect. She spent her first weeks in Neonatal Intensive Care and had major heart surgery at just 10-days-old. Lexi’s parents, Sally and Stewart, and step-dad Mark, were always told that she may not reach milestone birthdays and further heart surgery would be needed as she grew bigger. Complications during her first surgery left her without enough oxygen, resulting in delays in her physical and developmental milestones.

“From 26 weeks when Lexi was diagnosed during my pregnancy, we were told she may not survive birth. Then, she wouldn’t see her first birthday, she would never reach five, she would never hit double figures, she would never be a teenager, Lexi surpassed all the medical staff’s expectations.” said Sally.

“We were always guided by Lexi and knew that she would know when enough was enough. This meant that every birthday with her was such a massive event in the family calendar. And every year, in my mind, I felt such a sense of achievement and pride we had chalked another off. She just fell short of getting to 18. Our very own Peter Pan.

“Lexi was our fourth child, and it was difficult for us adjusting to unknown things. She was unable to talk in the usual sense; she could not walk and was fed through her tummy. I found for a period; I was grieving the child I didn’t have and learning to love the one I had. But, oh was she loved, and she became the centre of our family.

“Lexi communicated in her own way. She made lots of noise, laughed a lot and clapped with such joy and gusto. You heard her before you saw her, she was always bashing her feet on the footplate of her wheelchair with excitement.

“She was so full of personality. For everything she couldn’t do, she made up for in leaps and bounds. She was spirited and stubborn and mischievous. She was all about sensory and if something was within her reach, she would pick it up, have a good look and have a good chew on it. She took someone’s hat once.”

Lexi was diagnosed with Global Development Delay along with her heart condition. And in July last year, Nephrotic Syndrome, an issue where her kidneys were leaking protein into her urine.

In September 2024, Lexi was in hospital being treated for this new condition, when she had a seizure leading to a cardiac arrest. “At that point she couldn’t come back, and our baby had just had enough. We sat and held her as she left us, her body was so tired after years of being prodded and poked.” said Sally.

“When she died, everything stopped, having to leave the hospital with her empty wheelchair was one of the most difficult things we have had to do. Lexi was taken to Rainbows that night and we spent the next week there with her. I don’t know what we would have done if we had to say bye to her at the hospital, after it all happened so fast and without warning.”

“When we arrived at Rainbows, it was so comforting. Lexi had been at Rainbows since she was a little girl and the surroundings and staff were all familiar, and to her Rainbows represented such a happy place.”

“I cannot put a price on how much we valued being given the opportunity to spend that week with Lexi. We were in our own bubble, being allowed to grieve as we needed to. If we didn’t have that time, I don’t know what we would have done. Being at Rainbows really helped our transition. Her siblings were supported too, and helped to make lasting memories with Lexi, such as hand and footprints. The Rainbows staff treated us all with such care and empathy and Lexi with love and dignity. It is an experience I will forever be grateful for.

“Lexi had so much fun at Rainbows over the years, including two birthday parties,” said Sally. “Rainbows gave her the chance of some independence from me and gave me the opportunity to spend time with my other children, Courtney (26), Oliver (23), Erin (20) and Heidi (14).”

“Now we attend the bereaved parents’ group once a month. I don’t look forward to going, but I am glad to go. Sometimes it feels like we are so alone in this experience and although people try to empathise, you can’t fully understand unless you have gone through it. The group is emotional but comforting and you can see people further into their grief journey and that is helpful. Especially when you can’t see how you will ever get past the pain.”

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