Thursday, June 30, 2011

Fetal Echo Cardiogram

The fetal echo cardiogram on Tuesday at Sick Kids went fine.  No problems at all.  So that's good news.  The medical fellow who did the ultrasound was 16 weeks pregnant with twins...can you imagine how hard it would be for her to have to tell people that things aren't good with the heart while she's pregnant herself?  A tough spot to be in.

So we're glad that went well, because if it hadn't, we're pretty sure that the possibility of using any treatment options/end results liver transplant would have been eliminated.

On another note, I've been looking for blogs from anyone who has documented their time in treating a baby with OTC.  I havn't managed to find any.  I have found a few blogs that talk about treating their children with other urea cycle disorders (of which OTC - ornithine transcarbamylase deficiency is one of six urea cycle disorders, and the most common of the six). 

Even though it's not exactly the same (but similar) I found Katie who posts about her experiences with her daughter (who will be 1 in August), who has another urea cycle disorder called Carbamoyl Phosphate Synthetase 1 (short form is CPS-1).  They had a liver transplant done at 4 months of age, and she has many posts about the reality of the disorder and the reality of life after transplant.

In case you are interested in taking a look at her blog, it is at:
http://from-magerks-to-i-dos.blogspot.com/

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