My DD has been referred to a geneticist as the consultants believes she may have Russell Silver Syndrome. He has ordered an x-ray and blood tests including genetic test. She is a tiny girl 97cms at 60 months and does present with some of the signs of RSS. I know that not all cases are diagnosed using a gene test however and I am worried about screening her as it could bring up a whole raft of other ailments that she may develop very far into her future. The RSS itself can be treated in some part with growth hormones but he insisted that it is not a life limiting condition. Without growth hormones she may reach 4ft 8 adult height.
I don't know what to do about the test. He wanted her to have it there and then but I couldn't make that decision without speaking to my husband so have delayed it. The consultant stated that he would have to disclose all illnesses/conditions that the test identified even though they were only looking for RSS. What if we found out that she may develop bowel cancer in later life or parkinsons in her 50's how would we carry on with our 'carefree' family life knowing that?
Is it better to know or is ignorance bliss?
I want to do the best for her but I'm not entirely sure having such a lot of information is helpful. Any advice would be gratefully received.
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Children's health
Is genetic test pandora's box?
10 replies
Nikkip0ps · 05/02/2016 10:15
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