Bit of an update…

Lots of people have been asking how things are going etc and I realised that I haven’t done an update for sometime!

We have since spoken with a genetic councillor, she couldn’t really add to the information that was given in the leaflet thingy (that I posted last time) as obviously no one knows the effects of the Trisomy until he is born, but she is a lovely lady who made me feel a bit better about everything… and if I am worried about anything or just want a chat/rant/whatever then I can just ring her…

We also met with one of the Neonatal consultants (who will look after him when he is born) and they will do all they can as normal for the CDH, so that is good.

Have spoken to CDH UK, they have had families that have had babies survive CDH and mosaic trisomy (she wasn’t sure which trisomy mind but is checking)

We have also had a growth scan and the great news is *touch wood* he is growing as normal and is pretty much average size – one of the major symptoms of the trisomy is crap growth, and also heart problems, which again *touch wood* he hasn’t got… Clinging to the positives here, so I don’t go insane!!

I also keep getting asked how much longer we have till he is here – possibly because I am the size of a house due to waaaay too much amniotic fluid (very common due to the cdh etc) It is massively uncomfortable and can cause premature labour… as can getting it drained… ugh! what to do? Will poss leave it another week till we are 34 wks and he would stand a better chance if he were to arrive, and hope I don’t burst in the meantime!

So… if he were to stay put and I get induced a week early then only 6 weeks to go… eek!

 

When life hasn’t shit on you enough…

Just a quick post, not feeling up to talking about it, yesterday the consultant called with the rest of the amnio results (the bit that tests for all those niggly really rare things) Baby has ‘Mosaic Trisomy 9′.

Trisomy 9 is lethal and involves an extra #9 chromosome in each cell, Mosaic Trisomy 9 is the same but only affects some cells… how many/which cells we won’t know until he is born, he could be pretty normal or he could be very disabled, we will be meeting with the genetic counsellors next week to speak to them, also at some point the surgeon and doctors to see if they will still operate on the CDH… The consultant didn’t know as neither he nor his colleagues have encountered Trisomy 9 before.

To rub salt in the wounds the CDH is a separate entity and not related to the Trisomy.

You can read more information about it here.  xxx

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