"Critically ill child not seen as ‘sick’"

I presented to Newman Hospital with my child complaining of jaw pain/ear pain earlier last month, at first the team was great, prescribed ear drops for an ear infection and we were on our way. 

24 hours later my child's symptoms had began to change, they couldn’t keep fluids down, food down and couldn’t walk without holding onto their head saying how painful it was. We presented again, were given some anti nausea meds and sent on our way. 

The following day we presented again in the middle of the night, my child was no longer keeping even anti nausea medication down, and was dehydrated due to no fluids being kept down. They were admitted for the first time after this. After a 36 hour stay we were sent home as it was a virus and their ears looked clear. 

Another day passed and my child was getting worse, they were sleeping 20+ hours a day, was still unable to hold food and water down, had extreme photophobia (so extreme they couldn’t look at a screen), couldn’t stand without screaming and holding onto their head, personality changes such as aggression, eye pain and neck pain. We presented with them another 2x with these symptoms being told again, they doesn’t look like a sick child, their vitals are fine.

Finally after another presentation to the hospital on the weekend, an IV drip was put in and a blood test taken (7 days after coming to the hospital for the first time). Again after 48 hours we were sent home to return on mid-week to get blood test results. It was at this time the doctor finally took the mystery illness a little more seriously noting inflammatory markers were up and they thought it would be best to be sent to Port Hedland via the RFDS.

My child was critically ill at this point and nobody knew what was wrong with them, I asked for them to be flown to Perth for the highest level of care instead of Hedland as if they were discharged from Hedland hospital they would then have a 4.5 hour drive back to Newman as sick as they were and anything could happen on the journey.

Again, I was not listened to, I was told their hands were tied and my child would receive the same level of care in Hedland as they would in Perth and they would be going to Hedland unless I wanted to put them on a commercial flight (again risking something going wrong when in the air).

Of course my child was then flown to Hedland by RFDS, on arrival a lumbar puncture was discussed (because they didn’t know what was going on with them and this was a way to rule out meningitis), then it was discovered they needed a scan on their head/neck, they only had a CT scan in Hedland putting excess radiation into my child (both of which I refused as again, I believe this was not the same level of care that was available in Perth and there was no need to put a child through a lumbar puncture if it wasn’t actually meningitis).

At this point my family asked what the cost of a RFDS flight was from Hedland to Perth privately because my child was deteriorating in front of our eyes. We were told it would be $26,000 and we told them to send us the bill and put them on the plane. Magically, it was then we were taken seriously and they were on a plane to Perth within 5 hours. 

On arrival to Perth my child had an MRI scan and was it was discovered that they had mastoiditis (a skull infection), and their blood had began to turn septic forming clots in the arteries in their neck. They spent a total of 10 days in the children’s hospital, had to have 2 surgeries, had a picc line inserted to be able to receive the high doses of antibiotics and blood thinners required to get them better as well as ongoing medical treatment for the next 6 months, I believe this was all because a simple ear infection wasn’t taken seriously or treated properly by Newman Hospital and they didn’t look like a sick child. If my child had not gone to Perth when they did, I believe the potential for life long brain damage and permanent disability was very real, if not something even more sinister. 

The fact we were not listened to about how sick my child was in the beginning, the fact the poor child had to be put on 3 planes to get to Perth (when flying can dislodge blood clots) when I understand they could of gone straight to Perth is nothing less than concerning. 

In total we presented to Newman hospital 7 times before we were taken seriously, and even then our wishes were not listened to. I’m disgusted with the level of care and how quick they were to seemingly dismiss us. I believe there needs to be a change in policy.