Rose and Dylan

 

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When my son Dylan was 4 months old he got very sick. We were living in the Hunter Valley at the time. I took him semi-conscious to the emergency department of the local hospital. After a quick examination we were told to go home. I felt that their response had lacked experience. It also seemed that the interaction had racist undertones; the intern on duty just didn’t seem interested and said to take him to our GP if he didn’t get better.

I am Aboriginal and have experienced this sort of response before. Had I known that he would end up with Encephalitis and intellectual disability, I would have insisted he be admitted and be further checked out.

The next morning a friend (who had kids of her own) came by and she knew that there was something wrong with Dylan.  As a first time Mum I wasn’t sure if it was normal for a baby to sleep all the time. We rushed Dylan to see his local GP. They immediately knew that Dylan was very sick and we were sent in an ambulance to the local hospital. Then they finally admitted that Dylan needed Paediatric specialist treatment from Mater Hospital in Newcastle.

The team of specialists arrived by Rescue Helicopter from Newcastle to assess and stabilise Dylan. We were airlifted to the Mater Hospital where he was on life-support for 3 weeks and spent several more weeks in hospital recovering. The paediatric specialist that diagnosed Dylan’s condition said that if Dylan had been treated when we first went to the emergency department then the infection wouldn’t have spread into his brain.

The cause of Dylan’s illness has never been confirmed. The doctors tried to explain away Dylan’s infection saying it was caused by environmental factors. They asked if we smoked, if the house was clean, if we had animals at home that he may have had contact with.  Again I felt that these questions were based on assumptions and prejudice; our house was as clean as anyone’s!

Dylan is now 20 years old and life has not been easy for him as a result of all of this. He hasn’t had good support from mainstream disability services because he is Aboriginal and Aboriginal services often don’t know how to deal with his disability issues.  I feel that we have a case to sue for medical negligence, and I am working with lawyers to get a case together in the hope that if we get some compensation it will make Dylan’s life easier. There have been so many obstacles to preparing the legal case; the original notes from the hospital have been lost but I will keep at it.

I am convinced that if he had received the right treatment none of this would have happened. I feel that as a mother I did the right thing but I have been let down by the system. However, what I have learnt over the years is to trust my intuition and to speak up when I know something is not right.

Rose Nean