Zebulan's Story

4-year-old Zebulan 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 has lots of admissions to hospital. 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 Zeb 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 Specialists The family is supported by Roald Dahl Children with Medical Complexity (CMC) Nurse Specialists Eleanor, Grace and Sarah who Michael describes as “The voice for us.” He explains, “If Zeb’s admitted, they’ll always come to see us as soon as they realise we’re there. If we don’t understand what’s going on, they’ll find out and come to tell us. They are always willing to listen, no matter what the problem is. They support us and understand.”  Zeb's mum Jordan explains that when Zeb is admitted to A&E, the first call they will make is to the Roald Dahl Nurses, as the family know they will be able to support and coordinate any care Zeb needs. Jordan explains "They are on call if we are worried about anything to do with Zeb's condition and the amount of organising they do to coordinate his medical care is amazing."

Support from their Roald Dahl Nurse The nurses keep in touch with the family, even when they are home from hospital as Michael explains, “Every so often they will send us a message to check-in. They are always ensuring that Zeb’s got everything he needs and have a general care for the whole family, it’s not just their job.” Zeb and his siblings have also attended family workshops provided by the charity during long stays in hospital. Jordan explains, "The charity also organises a complex care zoom group where we can talk to other families caring for children with so many different needs. It's so helpful knowing you're not the only family going through something like this and listening to the way others have dealt with problems."

Your Marvellous Support Roald Dahl’s Marvellous Children’s Charity exists to establish 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, "The Roald Dahl Nurses are absolutely phenomenal, I can't even tell you how good they are." If you can, please donate today and help provide more marvellous nurses.