Finding out that your beautiful newborn baby boy has severe hemophilia can be very upsetting. As I looked down at Luka 5 days old with every inch of his perfectness, I thought there must have been a mistake. Maybe the lab switched the results with another baby. Maybe his factor levels were a mistake, maybe he had mild hemophilia and not severe. Needless to say, the facts were facts and I had a newborn baby boy with severe hemophilia A, which is a rare and severe bleeding disorder. Luka’s blood does not clot on his own and simply walking can cause spontaneous bleeds. He would need to be intravenously injected with factor 8 so that his blood can clot. We were scared and nervous and we just were not sure what growing up looked like for Luka. Luka had bruising on his body as a baby if someone held him too tight, we bought clothes with padding to protect his knees when learning to crawl and of course a helmet to protect his head when learning to walk.
Just when we thought of every preventative measure we could take at 10 months old, Luka tried to crawl up my leg, slipped and fell into the corner of a door. Off to the hospital, we went where it took me, my husband and a nurse to hold him down as another nurse found a vein in his ankle for treatment. He had a large hematoma on his head. It was at that point the hemophilia treatment team told us that we need to start a prophylaxis plan where Luka would receive treatment weekly to prevent bleeds before they happened. We were scared and nervous as the team taught our parents to do this at home. Because Luka was so young, his veins hadn’t yet developed and I couldn’t find them. We opted to have a port inserted in his body to give me direct access to his vein. We now infuse him every other day at home. I am envious of his bravery and the strength he shows through his treatment plan.
Luka is thriving with this treatment plan and plays basketball, soccer and loves riding his bike and scooter. I never thought we would see the day when we were relaxed and comfortable with Luka being active like all the other boys his age.
Luka looks forward to taking a special trip with the support of the Guelph Wish Fund. We are all so deeply grateful for this and for making Luka feel really special!
-Dani and Fiona
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