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Updated  22 August, 2002.   

Diagnosis – the unfortunate truth

 Often we are asked…how did you know there was something wrong?  How did you know she had a brain tumour?

 Early in the new year I had developed mastitis, something I never had with Casey, and something I would prefer never to have again!  Unfortunately on the weekend leading up to Megan’s diagnosis I had felt the early signs of mastitis returning.  As we had just moved into a new house, and I had Megan by C-section, my mum was still staying with us.  She had nagged me all weekend to visit the GP on Monday, and although I was actually feeling much better I went anyway (at least it got my mum off my back).  While I was there I asked the GP to give Megan the once over as I felt that perhaps she was vomiting a little more than what I would have considered normal, however she had still put on weight nicely and everything was growing within proportions.  The GP noticed Megan had an ear infection and we were all quite relieved that this was the cause of her irritability & vomiting.  She prescribed an antibiotic and asked we return the next day to ensure the antibiotic was having the desired effect.  The next day came and it hadn’t appeared to have improved.  She wanted to see us again the following day.  That night we noticed when we lay her down on her back to change her nappy that her eyes rolled downwards in her head – looking a little eery.  We told the GP this, and she recommended we visit with a paediatrician that same day.  As we had never been to a paediatrician we did not realise that it was rather ‘unusual’ to get an appointment on the same day it was requested, often having to wait several weeks for an appointment.  When he saw Megan, he wanted us to go for an ultrasound the following morning.  No one seemed particularly worried at all, and so, we as parents, also weren’t worried.  We thought it was all related to the ear infection. 

So, at 9am the following morning, we went for an ultrasound of Megan’s head.  When the technician had finished we asked the usual “Is everything OK?”  Only to be told that she only took the pictures, the doctors interpreted them.  She went off to get the doctor.  We thought this a little strange, had a moment of worry, and then figured that this was probably a standard response – to cover her in case she said everything as OK and it wasn’t or vice versa.  The doctor returned with her some time later and got her to look at Megan’s head through all different angles – the screen looked like nothing to me at all.  When we left, they told us that the results would be through in the afternoon and they would fax them to our paediatrician.  We weren’t worried – we went shopping!

It was in Target, whilst looking at blinds if I recall correctly, some hour after leaving, that Richard noticed a message on his mobile phone.  We went outside to get better reception and the message was from the paediatrician, requesting we ring back urgently.  Richard called and was told we needed to be at Monash Medical Centre in 2 hours, for Megan to have an MRI.  I can remember Richard asking if “that was the tunnel thing” and I started to cry.  I knew something was wrong…..

We were admitted into Monash, and were told they could not get a paediatric anaesthetist and they wanted us to try and feed Megan, and hope she would sleep through the MRI.  I didn’t think this would work, as it was very difficult to settle Megan, and she was vomiting quite frequently now.  It took a long while to get her to sleep (and vomit all over mum in the process) and we managed to get Megan in the MRI machine.  Mid-way through she woke up and the MRI was over.  They had managed to get a few good pictures but no one would give us any results.  We were told we would have to wait until the next day for the results, when our paediatrician, who was also a consultant doctor at Monash, would come and see us.  This was very unnerving as, earlier in the day, we had been surrounded by three neurosurgeons asking us a lot of questions.  Richard looked at Megan’s chart on the end of her cot, and it said we were admitted with hydrocephalus.

Hydrocephalus.  What was that?  We had no idea.  Richard went home, surfed the internet for a while, printed all he had found, and brought it back in for us to read.  We read about shunts, we read about causes, we read all we could find on it – but we had no idea why she had it.  I had a few fearful moments when I read that one cause can be due to a blow to the head, and I worried they thought I had abused Megan.  Then I remembered a day when Casey had accidentally head-butted Megan whilst I was feeding her – but all seemed OK so I hadn’t thought any more about it.  All I could think about was that somehow I had done this to her.

The next day finally arrived and we were told in very simple words – your daughter has a 3cm growth.  She has a brain tumour.  Part of me actually felt a little relief that it wasn’t due to a blow to the head – and wasn’t caused by Casey.  The rest of me was raked with fear for my little girl.  What did this mean?  Did she have cancer??  She was only a baby….  How could this be?

Australia Day was the day we were told.  This was a Friday – a public holiday.  Megan needed to have a repeat MRI under general anaesthetic which was scheduled for Monday.  We weren’t allowed to go home over the weekend because they wanted to monitor Megan’s ‘head growth’ and ensure she was OK.  They did actually let us home on the Sunday for ‘day leave’ which was great.  All weekend we tried to figure out what it meant – having a brain tumour.  We went into Monday’s MRI, looking back on it, very naive.  We had hoped that they would tell us that they would ‘simply cut the tumour out’ and she wouldn’t need any shunts or further treatment.  We couldn’t have been more further from the truth.

 Not only were we told that Megan needed shunts, we were told she needed two.  One on either side, as they weren’t confident that one shunt would successfully drain the build up of fluid due to the tumour, which was situated in the midline of her brain, growing into the ventricles, which are usually fluid-filled spaces.  We were also told that there was no treatment that would help Megan and that we should, once the shunts were inserted, take her home and hope the tumour didn’t grow.  The neurosurgeon told us to schedule another MRI in 3 or so months.  We could hardly believe our ears.  We wanted to know what would happen if it did grow?  We were told in no uncertain terms that “that would not be good”.  How dare this person tell us to take our child home and wait to see if she will die?