Zebulan's Story

2-year-old Zebulan is supported by his Roald Dahl Nurse Eleanor. He is a happy and relaxed little boy who loves music and noise and likes to be around people.

Meet Zebulan Zebulan was born with the rare genetic condition Cat Eye Syndrome, which caused a total anomalous pulmonary venous drainage in his heart. His dad Michael explains, “The simplest way to describe it is that his heart was the wrong way round, so the day after birth he had major heart reconstruction to correct it. He also had three holes in his heart. The condition may cause long-term learning difficulties, but we don’t know yet how that will pan out. Then, at four days old, Zeb also had a major brain haemorrhage and underwent brain surgery at six days old. The haemorrhage was in the cerebellum and damaged his balance and co-ordination, as well as his swallow, so he is PEG-fed.” Michael continues, “Zeb spent a long time in hospital recovering from heart and brain surgery, so he was vulnerable when we were discharged. He was home for a week and then had to go into hospital because his line was blocked and he needed blood thinners. When you feed like this it can cause lung problems and it’s not connected to his condition, but because of this vulnerability he had these issues and was in hospital for another 10 weeks.  He had lots of admissions to hospital in 2022, a ridiculous amount of visits, in and out with aspirations and stuff like that. We also go in for outpatient appointments like physiotherapy, speech & language therapy and to see the dietician.” Caring for a child with a complex medical condition brings unique challenges for the family, as Michael explains, “Emotionally it’s been a challenge for all of us. Our other children might be invited somewhere and we can’t go, or there’s day trips we’d like to do with the children, but there’s no appropriate equipment. We can’t often physically leave him with someone, as we’d have to train them to do his feeding pump, suctioning and train them on this and that, and trust that they have the training and the energy.”

Meeting their Roald Dahl Nurse Specialist The family is supported by their Roald Dahl Children with Medical Complexity (CMC) Nurse Eleanor who Michael describes as “the voice for us.” He explains, “If Zeb’s admitted, she’ll always come to see is as soon as she realises we’re there and if we don’t understand what’s going on, she’ll find out and come to tell us. She’s always willing to listen, no matter what the problem is, and she tells the consultants to listen to us. She supports and she understands.” 

Support from their Roald Dahl Nurse Eleanor makes a point of keeping in touch with the family, as Michael explains, “Every so often she’ll send us a message to check-in. She was running our TAC (Team around the Child) meetings until the social worker took over last month, making sure everybody was communicating and she got all of our children involved. She’s always ensuring that Zeb’s got everything he needs and has a general care for the whole family, it’s not just her job.” Michael continues, “Eleanor has really helped us with our daughter, as we think she suffers with trauma and she might have ADHD. Eleanor spoke to the health visitor to arrange a visit and review. She’s very much a go-between and she knows what needs to be done. Zeb recognises her and interacts with her, which is a real benefit, as he’s only just started understanding and being excited when he sees people again.”

The charity connection Roald Dahl’s Marvellous Children’s Charity provides Roald Dahl Nurses to support children like Zebulan and their families. This is only possible thanks to the generosity of the charity’s supporters. Michael commented, “Eleanor is absolutely phenomenal, I can’t even tell you how good she is. Thank you so much to the charity’s donors, she is so efficient and willing to help, she genuinely cares.”   Help us raise £1 million to establish Roald Dahl Nurses in hospitals across the UK for children living with the most complex medical conditions. Donate today and every penny of your generous donation goes directly to providing this crucial care for children and their families. Thank you.