May 20, 2010
Some news
So the news from the latest scan is good and bad. William seems to have 'multiple cardiac rhabdomyomas', which are basically benign tumours in his heart. But they are small, and not likely to grow much more, which means they are unlikely to cause him any problems. And these types of tumours start shrinking soon after birth and contiinue shrinking until they disappear entirely. That's the good news....
The potentially bad news is that these types of tumours are strongly associated with certain syndromes, in particular tuberous sclerosis (TS), especially when they are multiple as in William's case. i had heard vaguelly of TS before but didn't really know what it was, so i've been Googling it since Tuesday. See here for some more info: http://en.wikipedia.org/wiki/Tuberous_sclerosis
As you can see the syndrome varies widely from person to person with some so mildly affected they may not even know they have it, and others severely affected with learning disabilities, developmental delay, epilepsy, tumours, behavioural problems, autism, etc. Obviously i hope that William doesn't have this condition, but if he does we will do our absolute best for him.
i have to go to a specialist centre in a hospital 30 miles away for further scans and tests in 2 weeks' time, then the consultants there should be able to tell us more. i am nervous and scared, but ultimately frustrated by not knowing. At this stage Finn looks to be healthy, so that's one blessing. For now we'll just keep holding on and hoping that William turns out to be too.
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10 comments:
keeping my fingers crossed for you.
3:18 PMi have a friend with this condition who's mother was offered an abortion on the basis of diagnosis through a scan but she's now in her twenties and has pretty much no symptoms at all.
He's a lucky boy to be coming into such a strong, ,loving family!
love
s
Libby...Big hugs for you and the little guy(s) your carrying. Not knowing everything is hard. No doubt about that.
4:15 PMBig ol hugs!
mouse
This must be so scary for all of you. I am sending positive, healing thoughts across the seas to you.
6:14 PMBig hugs to the whole family.
Jojo
I know this must be a really tough time, especially with the not knowing. But on the bright side, if the worst came to the worst, he has a mum who is an expert with this sort of thing, and a loving family to be born into.
9:16 PMMy Sir and I are thinking of you,
Bunny xxx
You are in my thoughts! I know that even if all isn't perfect with William you and your Sir will love him and enjoy him just as much as Finn and Poppy. Try not to look up too much information before you have a definite diagnosis, added stress isn't good for you either. :-)
11:22 AMHugs. Hopefully the next scan will give you only good news!
Measha
don't worry too much
1:16 PMeverything will work out for the best...
my prayers for you :)
Just a big hug and reiterating what others have said. Praying for you, for your Sir, for Poppy, and mostly for the twins.
1:35 PMi know this had to have been an incredibly difficult post to write, and yet i do appreciate you letting us all know what is going on, we do care about you and your family.
Just one more .... *HUG*
thank you to everyone who has left comments and emailed, it really does help to know we have people out there thinking about us and supporting us, even from afar. Sir and i are doing our best to stay positive, and to keep the tadpoles relaxed through music and massage.
11:24 AMThinking of you and your family Libby - you obviously have a lot of love between you and I'm sure that will help you all to stay strong.
11:43 AMAnd there are obviously lots of people here that care about you too.
*hugs*
Jx
thanks J :)
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