Harry Potter fan Markus was only 6 years old and eagerly anticipating the school holidays when his life tipped upside down. Without warning a typical childhood tummy bug escalated into a severe medical emergency that required the combined efforts of specialists at Wellington Children’s Hospital and across the country to save him.
Diagnosed with atypical Guillain-Barre, which is a rare disorder in which the body’s immune system attacks the nervous system, the onset was so sudden and severe that within two weeks Markus had become paralysed, had to be ventilated and was in full gut failure. Mum Karyn told us, “This was extremely traumatic and scary for the whole family and we were only able to cope day to day as we waited to see improvements.”
After emergency surgery to stabilise him Markus was flown to Auckland where he and Mum Karyn spent seven months. Separated from Dad Mike and his two brothers back in Wellington, Karyn explained that, “It was wonderful to eventually be relocated back to Wellington Children’s Hospital. They had been following Markus’s journey so closely and working with the team in Auckland to ensure critical continuity of care.”
Markus remained in Wellington Children’s Hospital for the next 3 months, undergoing five more complex surgeries. Because of how unique his case is, his care has been a team effort, with problem solving across multiple specialities. “We are so grateful for the teams who have gone above and beyond to find solutions. As a mum I am also grateful for all the incredible professionals who have taken the time to build meaningful relationships with Markus. It seemed like it was just overnight that Markus left a normal busy childhood and found himself in a completely adult world. In fact, he had many long months with no opportunities to be with other children.”
Although Markus, now 8, is living at home again he still has a long journey ahead of him with frequent visits to Wellington Children’s Hospital, and at least one other surgery on the horizon. Markus told us, “When I am sick and in hospital I really miss my home and family. I miss my old life where I had energy and was silly and fun like my brothers. But I do like going into hospital and having surgery. Then I know that the doctors are doing something and helping me to get better. I like going in to see the special friends I have made like the nurses, physios and play specialist. ”
Despite being one of the greatest challenges a child can face, being sick doesn’t always mean being sad, and Wellington Hospitals Foundation donors help to make our hospital a more reassuring and child friendly space. Equipment, comfort and care items funded by our donors make an enormous difference to a sick child’s experience in hospital. Karyn explains that the environment is incredibly important to children facing profound health events and challenges, and that warm and attractive child focused surroundings are essential to their recovery and care. “It has been heart breaking for me to see Markus removed from his home, school and community and so to have a place where the physical environment creates a positive experience for him is a small way of adding colour, life and a sense of fun back into his world.”
“I miss home” – With the tracheostomy needed to assist his breathing, Markus was unable to speak and had to communicate in writing which was a huge challenge for a 6 year old.
The opening of Te Wao Nui – the new Child Health Service and Hospital in the Mark Dunajtschik and Dorothy Spotswood Building, means that for the very first time a range of paediatric services will now be brought together under one roof. This will allow for much easier collaboration across different paediatric specialities for those children with complex or multidisciplinary needs. A welcoming, modern and fit for purpose environment will allow children and young people, like Markus, to receive the best possible care; and to be seen not only as a patient but as a young person first and foremost.
“Knowing that our incredible team at the hospital are supporting us as Markus’ healing journey continues means so much. We are just so proud of the way he has coped with all that has happened and while there are still big challenges ahead we are confident that he will meet them, along with his cheeky smile.”
We thank Markus and his family for sharing their incredible story with us and wish him all the very best for his ongoing recovery.
