It is terribly difficult to challenge medics. Sometimes they seem almost determined to undermine and patronise you.
DD had over a year of spontaneous, heavy nose and mouth bleeds and a tiny accidental cut to the scalp which bled seriously before she was two. The incident which took place just before her DX was awful. I had insisted on her being kept in and monitored as I was sure given hrt history and severe bruising that she had something like haemophilia.
I will never forget waking up and hearing the doctor on his ward round sniggering outside with his colleagues that, "the mother is hysterical and thinks the girl has haemophilia. The bleeding has stopped now ho ho". I dragged him into the cubicle to see a blue-lipped still gushing DD, head stuck to the pillow. Luckily we DID get a test as a result of it all and he spent a lot of time dodging into cupboards and sluice-rooms when we met in the corridors.
Now haemophilia does not cause problems in girls as they are carriers, but it was clear that something wasn't right. Turns out that her problem is in 1% of the population. There are FB groups about it and she is recognised to be a classic case. Was it too much for a trained professional, (well several actually, but none as nasty) to consider that she may suffer from something with an incidence that high? Apparently so.
I didn't know about the MSbP miscarriages of justice until much later but it chills me just thinking about it.
Also, even after her DX, nobody told us the signs to watch out for that she was bleeding out and didn't have much time. They are pretty obvious but on one occasion when we were getting no joy from the hospital or G.P we called the Paramedics out and even they told us to wait until morning before taking her back to hospital. The on-call doctor at the hospital was told of her symptoms, (loss of consciousness / vomiting blood, white tongue) and told us to wait so we did. When we got there they couldn't believe we had waited so long and we had a massive telling-off because she was on the point of cardiac arrest and death. With a gradually-weakening child it is hard to know where the line between, "seriously ill", and, "dying" actually is. This child's symptoms would have been mainly internal and not as visible as something really really wrong as DD's, which were still ignored by various medics even after she was known to have a life-threatening condition! Poor, poor family