Help Families with a Sick Newborn Baby in Hospital

Keaton is a bright, bubbly little boy who turns four in April. He is keen to show everyone he meets the tube attached to his body through which he has his daily dialysis. Watching this little boy, you would never imagine that his mum and dad have been told that he might die four or five times already. Keaton was born with kidney failure and with a bladder that doesn’t work properly.

For a while Keaton was in and out of hospital constantly. “He had pneumonia, bronchiolitis and he suffered a three-and-a-half-hour seizure which nearly killed him,” says Kirsty. “It was such a terrible time, I still cry over it and feel so much anxiety about it even now.”

Keaton’s renal nurse referred the family to Rainbow Trust as she could see the family needed support through their difficult ordeal. Lesley, a Manchester-based Family Support Worker met the family and has been supporting them for the past two years.

“I needed support, advice and someone to lean on,” says Kirsty. “Lesley has been there for me from day one and she’s been amazing. Even just telling me we’ll get through this and helping me build up my strength to be there for Keaton is amazing. She also takes me to the hospital for Keaton’s appointments and plays with his little brother Brayden while I talk to doctors.”

“I can talk to Lesley and although she’s connected to us all because she knows us, she can still offer us support and advice. She doesn’t get upset like my family does, so I can talk honestly with her without fear of adding more unhappiness to the situation. She’s helped me stay strong. She can pick me up when I am down and is there for me whenever I need to talk to her.”

Rainbow Trust Family Support Workers spend a lot of time talking to, and listening to parents at every stage of a child’s illness. It’s these breaks and time out that parents really cherish. Family Support Workers know how important it is for these parents to do something normal. They take parents out, whether it is to the park or to a garden centre for tea, it just means that they are still involved in life outside of the hospital. For some, this is their only social interaction outside of their child’s hospital room.

Kirsty will be donating one of her kidneys to Keaton as soon as he’s strong enough for a transplant. “I am so excited. Lesley will be there for us throughout the transplant. I couldn’t have gotten this far without Lesley.

“I want to tell people about what Rainbow Trust do. Parents who feel like every day is a struggle and they can’t go on any more. Rainbow Trust can help. They can pick you up and save you when you don’t think you can get up again. Every day I thank her for being with us, I couldn’t do this without her.”