Afternoon all,
Firstly as i type this i am 100% serious, and i swear am not looking for sympathy, just maybe some one to talk to who has the same condition or if you know some one who has gone through this.
In 2001 i was pregnant with my first child, me and then hubby (now ex) obviously were very happy, then at 8 months into the pregnancy we found out our baby had Intracranial Thrombocytopenia, this is basically where the antibodies in my body attack the placenta and kill the baby's platelets, the baby's platelets can not clot and the baby has a massive bleed on the brain and in the head. This is such a rare condition that my consultant had never seen it before in his 30 years of medicine...
Any way the only reason we found out about this was that the midwife came out to my home as i had really bad back and couldn't walk she said "oh your baby is small for 8 months, i'm sending you for a scan" after a scan and an internal i was taken to the foetal medicine unit in the next city over (Newcastle RVI) (UK) and that is when they found out. By this time i was 8 1/2 months gone and my only option was a termination as the baby would never have survived birth there was less than 1/4 of his brain left alive due to the massive trauma of the internal bleeding.
We had a funeral for him and we had to register him as still born. Me and hubby eventually split up, we are still friends but the stress was too much for us.
I am with my new partner now and we are trying for a baby next year after we are married, and this WILL happen again ! so from 18 weeks i will have to have treatment one a week for 4 months, if this doesn't work i will need steroids and the baby will need platelet transfusions whilst in the womb up until 32 weeks then i will have the baby (if it survives the transfusions - there is a 3% of miscarriage) by caesarean. This is going to be a massively stressful time for me and my other half but i hope i have learned to be more open with my feelings. There is only at 25% of me having a healthy baby, i know 25% is better than nothing, but the selfish part of me wishes it were 100%...
It would be so great if i knew some one else with the same condition maybe that has been successful and had a baby, just some one i can talk to. Like i say it's such a rare condition my doctor can't even put me in touch with some one, so there is no chance of a support group !
This is not hereditary either, my sister got tested and obviously my mum had us 2 so they don't even know why it's happening to me.
I know this is long, but thanks for your time in reading. x
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