For a child with haemophilia, bumps and bruises can be far more serious than in a child without. What may present itself as a harmless bruise in a child without haemophilia, could potentially be permanent damage and chronic pain for a child with this condition.

Haemophilia is a hereditary genetic disorder, which usually affects males, where the blood does not contain enough clotting factors to control bleeding. Without enough of these factors, bleeding can occur for a longer period of time. This can put a child with haemophilia’s health at great risk, particularly where internal bleeding is concerned.

At The Royal Children’s Hospital (RCH), children receive treatment for this condition at the Henry Ekert Haemophilia Treatment Centre. The Centre is the only designated paediatric treatment centre in Victoria for children with haemophilia and other bleeding disorders and currently sees 180 patients with haemophilia.

One of the patients at the centre, Riley, was referred to the RCH in April of this year after being diagnosed with haemophilia. Angie and Dave, Riley’s parents, make the family trip to the RCH once every three months, as well as having consultations via the RCH Telehealth Service.

“Riley had a very swollen ankle. After taking him to see a doctor at our local hospital in Wangaratta, we were told he had haemophilia and that the swollen ankle was actually a bleed,” said Riley’s mum Angie.

“We were told that Riley’s haemophilia was severe and he immediately had a port put in.”

Insertion of a port allows for families to administer concentrated blood clotting factors to their child on their own, without having to come to hospital or inject the infusion into a vein two to three times per week. Infusions may also be required between regular doses if the child suffers a trauma.

Angie describes her little boy as ‘brave’.

“Through this whole thing, he has been so brave. He loves the hospital and he’s a really happy, playful boy. We’ve learnt to do infusions at home – the hospital staff have been extremely supportive. We live in a small town where we don’t know anyone else with this condition, so it’s great to help raise awareness.”

Dr Chris Barnes, Director of Clinical Haematology at the RCH, said there are current research studies and trials that could mean great news for children with haemophilia.

“The RCH is one of a handful of sites around the world trialling new treatment products for children with haemophilia,” Chris said.

“The study explores improved clotting factors that are active in the body for longer. This will mean less needles for families performing infusions at home, which can be a difficult process. It may also mean a reduced need for ports. We want to see less stress for kids undergoing treatment, and their families.”

Find out more about Haemophilia Awareness Week.