15-month-old Rameo has been an inpatient at the Noah’s Ark Children’s hospital since he was first born. He’s affectionately referred to as the ‘king of Island Ward’ and his infectious smile can brighten anyone’s day.
Rameo is, by definition, a miracle. He was born with no upper airway which should have made him completely incompatible with life. He was only alive at all because, incredibly, his food pipe had been acting as a substitute for his trachea and his body was able to receive small amounts of oxygen through a tiny piece of cartilage connected to his lung. It was something that his surgeons had never seen before.
At only a few days old, Rameo was taken to surgery for an extensive operation that his parents were warned he may not survive. During the seven hour operation, Rameo was fitted with a tube to provide nutrition directly in to his veins and his surgeons also re-formed an oesophagus and fitted a tracheostomy for Rameo so that he could be ventilated. It’s likely that he will receive food and breathing support like this for the rest of his life.
Since the tracheostomy was fitted, Rameo has moved from the paediatric critical care unit which was his home for many months, on to Island Ward. His parents, Adrienne and Teon, have been learning how to change and care for Rameo’s tracheostomy using a doll funded by the Noah’s Ark Charity – a vital stepping stone towards going home. Rameo has also been given a doll fitted with its very own trachie that will help normalise a tracheostomy for Rameo as he grows.
Juliet, Rameo’s play specialist, says: “During our play sessions, I noticed that Rameo really appreciates his doll, and really looks at its face, pats it back and rocks it. So I thought of attaching a tracheostomy to it, as Rameo likes to help suctioning too. I then remembered that we actually have special tracheostomy dolls which is where I thought it would be a great idea for Rameo. He often helps the nurses suction his mouth, but he isn’t so keen on the suction, so as a form of play therapy I showed Rameo how to ‘suction’ the doll’s tracheostomy. I even made the sounds to make it more realistic. The doll is now his forever, and hopefully will normalise having a trachy for Rameo.”
Mum, Adrienne, says: “We’ve decided to name the new doll, Reggie. We are hoping it will normalise having a trachy for Rameo and are hoping he will stop pulling on his tubes because he can now pull Reggie’s instead.”
Both Reggie and the training doll that Rameo’s parents have been trained on in order to be able to take their son home were funded through the Noah’s Ark Charity grant programme. It’s a fund that frontline staff can apply directly to if they have something that they feel will help the families that they care for in some way. That grant is made possible thanks to the generous support of people like you.