Parent noticed that her donor is “restricted” from a message on the
DSR from another family. She writes Fairfax and asks why the donor has
been suspended and also asks for any medical information she should have.
She hears back from them and writes me:
“The Genetic Counselor contacted me today and it was a medical problem
that was found in one of the children. The child had something called
Hypo plastic left heart. She asked if I was using this donor or if I
had children using him. Apparently this problem is genetic and
children usually do not live. I am not sure if someone had a child
and then the child died or if the pregnancy ended and it was DX. I
asked why I was not contacted and she said they would obviously not
contact parents who had delivered healthy children. They did contact
anyone who might have vials left. She did also share with me that
there are other children scattered across the country. I asked if
there was any chance that these children could pass it down and she
said it was the type of defect that only a small percentage of
children have and then as they get further away from the genetic
parent who had it the chances diminish and diminish.”
Makes me wonder how they determine when a medical illness is important
enough to warrant contacting all families who have used that donor.
What constitutes a “small percentage”? Doesn’t the child who may carry
this disorder have a right to know about it?