Nathan was diagnosed with severe hemophilia A at birth. His older brother, Benjamin, had received the same diagnosis when he was 14 months old. The diagnosis came as a shock, but at the same time it was a relief to finally find the cause of the bruising and injuries Benjamin had suffered.
Five weeks after Nathan was born, Benjamin developed an inhibitor after a severe tongue bleed. As the inhibitor level was low, he was able to have a central venous access by port-a-cath insertion and we started immune tolerance induction (ITI) with a recombinant factor VIII. Benjamin reacted well to the ITI and is now inhibitor free and on prophylaxis. The Hemophilia Team at the Hospital for Sick Children in Toronto were worried that Nathan too might be susceptible to the development of an inhibitor and suggested we try a plasma derived type of factor, Octapharma’s VWF/FVIII concentrate. Parents were very open to the idea after what Benjamin had been through.
At first, Octapharma’s VWF/FVIII concentrate was used on demand whenever Nathan developed a bleed. When he was nine months old he started to receive it every two weeks as a preventative measure, but also to slowly introduce it to his system. However, when Nathan was two years old, he developed a target joint bleed in his elbow and the decision was made to insert a port-a-cath so he could be treated prophylactically at home. Having the port in both boys and the ability to treat them prophylactically has been liberating. Nathan receives Octapharma’s VWF/FVIII concentrate every other day, has not had a bleed in over a year and, more importantly, has not developed an inhibitor. Nathan and his brother enjoy many activities and live life to the full with very few obstacles.