Oliver's Story

“I don’t think anyone can understand what Shannon did for us, or how grateful parents like us are for this kind of specialist support and for the people who’ve raised funds for it. They can’t understand how grateful I am or the impact they’ve had.”

It was only earlier this year that Kathryn met her Roald Dahl Nurse Shannon. Her new baby son Oliver was admitted to hospital for nine weeks and the family was assigned a Roald Dahl Nurse due to his complex needs and the number of specialists who would be involved in his care. Oliver was born last Autumn and a week or so after the birth he fell ill. Investigations identified issues that were worse than the family had anticipated – problems impacting his feeding, breathing and development – and Oliver was transferred to hospital. Investigations and some surgeries have been ongoing since to establish the cause and next steps as it’s clear that – while the sweetest and happiest of babies – he’s not developing or thriving, something which is a huge worry for his parents Kathryn and James. Meeting Roald Dahl Nurse Shannon But they have had a Roald Dahl Nurse on their side, and it has – they say – been transformational. It was during this first nine-week admission and the most stressful of times that the family met Shannon. “It was a few weeks into our stay, but I swear we wouldn’t be here, at home, without her support,” says Kathryn. “The nurses on the ward were wonderful, but there were different nurses each day, and we were seeing so many teams and felt nothing was being decided – we were being passed from one specialist to another.

“We felt lost and afraid. We felt that decisions weren’t being made. But then Shannon came along and was speaking to all those teams for us, finding out what they could do, what they needed, what were the next steps. There was a consistency to it. She was clearly determined to get the answers we needed, and to find out what was going to happen next. And if we had questions or were confused, Shannon was on it. It changed the whole experience, the whole journey. She gave James and I the energy and the fight to keep going.” Kathryn says it was the support Shannon gave her as a mother, too, that was unexpected and yet life changing. “I was there with Oliver every day and every night because he was so clingy. We knew if he cried too much it would make his breathing worse, so I wanted to be there to keep him calm. It was difficult, overwhelming sometimes, with two other children – Oliver has two sisters, 10 and 7 years old – at home. And along would come Shannon to see how I was. Asking me what I needed. 

“She made sure decisions were made, plans put in place to coordinate specialists at our local hospital and at the Children’s Hospital. And more importantly a discharge was approved. She was an angel. Even when we were discharged and searching for answers, or worried about some of the medications or pain relief or getting used to the tube feeding (Oliver needs to be on a 24-hour feed) she continued to coordinate so there was good communication between us. And she worked to handover to my community nurse and health visitor–coming to the home to meet us and making sure I had everything I needed, and we were all on the same page with plans for next steps. “I don’t think anyone can understand what Shannon did for us, or how grateful parents like us are for this kind of specialist support and for the people who’ve raised funds for it. They can’t understand how grateful I am or the impact they’ve had.”