Jayden's Story

Jayden spent the first three months of his life in Sydney Children’s Hospital, Randwick, fighting to stay alive. At just two days old he suffered two haemorrhages, one in the space between his scalp and his skull and the other under the surface of his brain. He was in critical condition, and his parents were told he was not expected to survive the night.

Jayden defied the odds that night and continued the struggle to stay alive in the Intensive Care Unit where he spent two weeks under daily care by Hospital staff. He was given several blood and platelet transfusions, but regardless of their best efforts, Jayden’s doctors noticed his haemoglobin levels continued to drop.

Jayden underwent tests and it was discovered he has a rare and incurable blood clotting disorder, Severe Haemophilia A. It means he is missing a clotting factor (Factor VIII) in his blood and for the rest of his life is prone to spontaneous bleeding, especially internally, which can affect his joints and muscles leading to immobility. Jayden’s family had to quickly come to terms with the fact their boy is required to have Factor VIII Replacement Therapy, to replace the missing clotting factor, for the rest of his life.

When he was six weeks old, his Haematologist discovered he had developed an inhibitor (antibody) to Factor VIII. This is a major complication for people with Haemophilia and means the antibodies attack replacement therapy causing treatment not to work.

Jayden started to bleed a lot more than usual, all over his body, and at three years of age suffered bleeding into the brain stem and gastrointestinal tract and was rushed to the Intensive Care Unit.  The bleeding put him at risk of either total paralysis or death. Once again, with the dedication of the Hospital staff, Jayden fought the battle and survived.

A few years later Jayden was diagnosed with another condition, Autism, which affects his behaviour, sensory processing, and social skills. His mum Lyn said it has been a daily struggle to balance the two conditions, as the disruptive nature of treatment for Haemophilia can have a negative impact on his behaviour as people with Autism generally function better when they have a set routine. The behaviour caused by Autism can also be a risk to his safety, as he can knock or bump himself during meltdowns, causing bleeds which will require treatment to stop the bleeding.

Jayden, now nine, currently undergoes daily injections, monthly blood tests, regular clinic appointments, weekly physiotherapy and hydrotherapy and weekly outpatient therapies to manage his conditions. He sometimes requires the use of a wheelchair during each bleeding episode and during recovery and rehabilitation.

Jayden’s mother Lyn said “I have faith that Jayden is in the best care. We are very grateful to be under the amazing care of Sydney Children’s Hospital.”

“They have saved his life, time and time again. I can’t thank them enough. But the Hospital is in need of community support with much needed funds so they can continue to provide the best possible care and treatment for all sick and injured children.”