When Seth was diagnosed with haemophilia at 14 months old it came as quite a shock to his parents, Erin and Nathan.
Haemophilia is a rare medical disorder that affects the body's ability to form a blood clot and stop bleeding. Although haemophilia is usually hereditary, in around a third of cases, such as Seth’s, there is no family history. Seth was diagnosed after falling at preschool and getting a cut in his mouth that just would not stop bleeding. After several hours Seth was rushed to hospital for treatment; and tests revealed that he had severe haemophilia A.
Seth had shown no real signs of haemophilia as an infant and seemed a perfectly healthy, happy baby. As he began to crawl he developed lots of bruises, but these had been dismissed by their general practitioner as nothing serious.
The months following the diagnosis were a steep learning curve for Erin and Nathan as they came to grips with the reality that their beautiful boy had a serious, chronic medical condition. They worked with the staff at their haemophilia treatment centre and their local HFNZ Outreach worker to learn all they could about his condition.
On the outside Seth is a happy, boisterous boy who is full of energy. Inside he is missing a vital protein to help his blood work normally. They live in a small town and when Seth got a bleed in his knee or ankle they had to drive the hour into the hospital so that Seth could have intravenous treatment to replace his missing factor VII.
A few months after his diagnosis, Seth developed a life-threatening internal bleed because of a small ulcer in his intestine. It was a very frightening time for his family. Seth was in hospital for several days and eventually needed a blood transfusion.
Seth recovered well and has not had any serious bleeds since. Seth has had a port (portacath), a small medical appliance, installed beneath the skin directly into a vein in his chest so that his parents can give him treatment for his haemophilia at home. Erin and Nathan have learned to do his infusions and Seth now has treatment a few times a week to help keep his factor levels up to hopefully prevent bleeding.
Seth is an active child who has recently started swimming lessons at a nearby pool. Swimming is one of the best exercises for people with haemophilia as the water supports the joints while enabling great cardio and muscle building. HFNZ are happy to be able to support Seth’s lessons with a grant through their swimming and exercise programme. His love of water extends beyond the pool, and like most kiwi toddlers, he seems almost magnetically attracted to ponds and puddles.
It is hard not to get caught up in Seth’s energy and enthusiasm. Whether he is chasing ducks or waving at motorcycles, he seldom sits still and keeps his parents very busy. Seth is already a bit of a dare-devil and is fanatical about motocross, coming from a long line of motocross riders. His parents struggle with knowing that one day they will have to help him understand his haemophilia, the consequences of hurting himself and explain why he can’t participate in some sports. A good place to start on that journey is the HFNZ National Family Camp, where they can get to know other families and children with bleeding disorders. For now they enjoy him for who he is, a very lively little boy.