“Lily could be our daughter at Rainbows, no machines, just Lily. Rainbows gave us the chance to cuddle her, be her parents and make memories that we will cherish forever.
“Our baby died at just under six-weeks-old. She had Neonatal Epilepsy. In the beginning, we didn’t know her prognosis or outlook and we really wanted support for her brother Maxwell, who was three. We were staying in hospital when we first met the Rainbows Clinical Nurse Specialist and she gave that support to us. It made such a difference having someone there, in hospital, who was just for our family.
“At first, we hoped Lily might be able to go to Rainbows to prepare for a transition home and the Rainbows nurse helped us with this. Then Lily got really poorly and went to intensive care, which was terrifying. It was at this point we knew we would probably never take Lily home. We can’t put into words how that felt, but the Rainbows nurse gave us hope that we didn’t have to stay in hospital.
“We couldn’t see our family when Lily was in intensive care, but having the Rainbows nurse was like having family there. She was our constant throughout. She was an advocate for us and she always had ours, and Lily’s best interests at heart. There was so much information from doctors, which was often confusing, and we didn’t know the next steps. She would make sense of it all and explain things to us in a way we understood.
“Lily went from hospital to Rainbows when she was five and a half weeks-old for end-of-life care. She died 24 hours later and stayed in the hospice’s bereavement suite.
“At hospital, Lily was hooked up to machines. We couldn’t even hold her because it was upsetting for her. When we got to Rainbows, her ventilator was removed and we held her. We didn’t know how long we had with her, so we just kept cuddling her. Then Maxwell was able to hold her, and we were given a precious chance to make memories.
“We got to enjoy the most normal things. Lily had never been outside and the most special memory for us was being able to take her into the Rainbows gardens and enjoy the sun. No beeping of machines; no watching numbers on a screen. We could simply concentrate on just being there as a family.
“The Multisensory Room was also incredible. Lily properly opened her eyes and looked around. She was aware and was engaged with everything that was going on.
“What also struck us were how caring the staff were and nothing was too much trouble, for us, for Lily and for Maxwell. He had Music Therapy and Sibling Support, which he still has now. And when we needed to be with Lily at Rainbows, the Care Team were always there for Maxwell.
“These moments are the ones we speak of fondest; the things we cling onto and really cherish. At Rainbows we could be parents and take in everything of her. We knew we didn’t have much time, and we soaked up everything we could. It was so special.
“Our Family Support worker was a constant support, at hospital, at Rainbows and with the funeral arrangements. It was a struggle for me to trust people, and she was the first person I could trust with Lily.
“After Lily died, she was in a quiet room at Rainbows and it was beautiful. It was so personal and not clinical, the nurses put on the lamp at night for her and closed the curtains. And our family, and Maxwell, could spend time with her. This all helped our transition we would have really struggled if she had just passed away at hospital.
“Rainbows gave us a home, made us feel safe and enabled us to be a family after losing Lily. For that, we will be forever grateful.”
Viki and Luke, Lily’s mummy and daddy
We couldn’t see our family when Lily was in intensive care, but having the Rainbows nurse was like having family there. She was our constant throughout.