Friday, April 10, 2009

Mantras And Mystics.

When Hari was born there was concern that she had some kind of cardiac problem. At first there was suspicion that her heart was in the wrong place but this was soon ruled out.

Some doctors would tell me that she had a heart murmur, others would tell me that she might have a heart murmur. At this point it was never really clear which opinion was the most recent or accurate!

When Hari was on ITU when she was three months old she finally had a heart scan and it was revealed that she had some cardiac issues that would need to be addressed.

When Hari was an inpatient at the QEH in London her cardiac status was reviewed by Philip Rees. He was keen that she should have the opportunity to have the problems corrected despite her level of disability but was clearly over ruled by other doctors.

When Hari's care returned to Bristol her heart problems were reviewed occasionally by Hyam Joffe. He would scan her heart at each appointment. To his credit he made more effort than most to actually talk to Hari.

But that was that.

The stance was that she had to weigh 20lbs for them to operate - and reaching this weight seemed to be an impossible task as nobody would investigate the medical reason for Hari's lack of growth.

At every cardiac appointment Hyam Joffe would repeat the same mantra and it became a bit of a joke that we were all wasting our time with these appointments - the joke being that it would be easier and cheaper if he made a recording of the mantra and instead of the hospital sending us appointments they could just send us a letter saying 'please play your recording at 3pm next Thursday' !!!! I didn't include Hyam Joffe in this joke but with the hospital grapevine being what it is he may well have heard about it!

I often wondered what would be different about the mantra if Hari ever managed to get to the 20lb target weight.

Eventually she managed it!

Off we went to the next appointment - expecting that as Hari had reached the target weight there would be some mention of putting her on a list for surgery. We even had some vague hope that the surgery might help in relation to her slow growth - although we didn't expect it to be the ultimate answer.

There was no mention of putting Hari on a list for surgery.

The mantra changed slightly - from we need her to be 20lb - to even though she's 20lb we would like her to be a bit bigger. How much bigger was not defined.

The pointless appointments continued.

Finally, when Hari was ten years old we received a letter giving her a date for surgery - two days before Christmas! There was no question of refusing this date but we felt that the only reason she had been offered the opportunity was that so many other families would refuse it - so the slot was going begging. If we refused this date we felt that it would be another long wait before she was offered another date.

The other interesting point about this was that the other children having the same procedure on the same day were all toddlers, apart from one (aged about seven) who was having a procedure re-done. Despite having reached the target weight, Hari had been made to wait until she was ten for a procedure that able bodied children were having aged two.

David Baum did try to suggest that the reason for this was that Hyam Joffe had been waiting for a new piece of equipment to be available - my response was to mention the length of weight and Hyam Joffe's crystal ball - because for that length of weight he would have needed a crystal ball to know that the equipment was likely to become available at any point in the future. David Baum knew that I had good reason not to believe the excuses!

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