Pizza parties and playtime; creating moments of happiness in hospital
With a delightful smile little Arlo, now 15 months old, greets all visitors to his small world inside the paediatric intensive care ward at King’s College Hospital, which has been his home since birth.
Despite a normal pregnancy and birth, weighing in at just over 7lbs, Arlo has remained an inpatient because he was born with a very rare lung condition, called Surfactant ABCA3 deficiency, which has resulted in him needing 24 hour oxygen support. He is one of only 200 cases in the world.
Although both doctors and Arlo’s parents Chantal and Michael hope that one day the family will be able to return home on ventilators, at the moment Arlo’s oxygen needs are far greater than any portable system could provide, so they wait for Arlo’s lungs to grow. Another future option may be a double lung transplant.
Family time with Arlo’s two older brothers, Luca and Sonny, helps to keep this wonderful and resilient unit together, despite the challenging circumstances. They enjoy pizza parties and film nights on the ward, as well as regular play time together, bonding and creating lasting memories. For mum and dad, it is a juggling act that has resulted in Michael giving up work to become a full time carer for his family.
We first got to know the family in August 2016 when they moved into the Camberwell House, staying with us for nearly three months until Arlo’s difficult and longed for diagnosis arrived. Realising that Arlo would have to make the ward his permanent home, the family decided to move home so that the older boys could maintain a regular school life. This resulted in a lot of travelling for Arlo’s mum and dad, as they took it in turns to look after their home and hospital-based children.
Despite no longer having a room with us, the family continue to be regular visitors to the Camberwell House. After seeing their baby brother on the high dependency ward, Luca and Sonny come over and let off energy in our wonderful, toy-filled garden.
A day pass scheme has been part of the Camberwell House since its beginnings but is sadly often underused, though the House does often help hospital therapists working with young patients who benefit from its homely environment.
Families with children on the paediatric wards at King’s College Hospital are more than welcome to come and enjoy our Camberwell House facilities: a fully equipped kitchen for home cook meals, a laundry room with wash and dry facilities, a communal TV room and a great play room filled with toys. We can also help provide baths and showers, and internet access.
For more information about the Camberwell House day pass scheme, please contact the House directly. Details can be found at www.rmhc.org.uk/our-houses/camberwell/contact-this-house.