Supporting families who are living with a bleeding disorder is just part of our crucial work. Your gift today will also help us to continue to advocate for our community, to ensure that the best treatments are available to everyone, right across Australia.
At 27 weeks into Monica’s pregnancy she began to haemorrhage. After four anxious weeks in hospital she went into early labour, and her son Noah, born dangerously premature, was rushed straight to neonatal intensive care.
Just three days later, Monica found out that her fragile baby son had haemophilia B. The treatment that could save him from the risk of a fatal bleed through a central line into his tiny chest could also put him at risk of a lethal infection.
“As Noah was premature there was a higher risk of cranial bleeds, so they had to give him factor treatment right away. As a tiny four-day-old he had a central line into his heart. We could so easily have lost him.”
“Last year, he was playing table tennis and he hit his knee. It swelled up massively and he couldn’t walk because of the pain, so we took him to hospital. They kept him in overnight and gave him two doses of factor.
Noah was so brave, and took it all in his stride. He came home on crutches and it took a good three weeks for him to recover, which shocked us. We thought once you’re treated you have a couple of days’ rest and you’ll be fine; but no, any sort of extended walking he did , for about a week, just created the swelling and the heat again.
He knew in himself that he needed to rest, which meant no sport and no activities…”
That is hard for an active 10 year boy - to play no sport and stay still for three weeks.
THANK YOU SO MUCH FOR YOUR SUPPORT
PROGRESS HAPPENS WHEN COMPASSIONATE PEOPLE SHARE A VISION AND WORK TOGETHER TO ACHIEVE IT.
Date last reviewed: 05/03/2018