Re: anyone decline the PKU?
Um I was saying that the people I know who declined were tested to see if they carried the gene to pass on. If they didn't carry it then they didn't test for it since there wasn't a gene to pass to the baby. Since it's rare, they felt like it was better to just get tested instead of having baby tested.
Originally Posted by PoshPants
So what if it's rare? does that help the family of a dead baby whose death could have been prevented
Not all states test for that much, it's worth checking into what your state tests for and asking for expanded testing if not and knowing what is NOT normal for a newborn is useful.
Rare also means not many docs know about the disorders, so if a baby shows signs often a doctor will miss it