anyone decline the PKU?

[Kiliki]

I learned last time that the PKU is best administered a few days after birth. (48-72 hrs? IIRC?)

But the PKU was done immediately last time and then had to be repeated later, and it was awful.

My MW said some families begin declining the PKU after they've had several children, figuring they would have seen any issues by that point.

I feel confident we have no genetic problems in our families.

But I am also worried that if we *don't* do the test, our baby could have some serious problem that goes undetected.

Anyway, anyone ever decline the PKU? Why?


ETA --- THIS is the test I am talking about. Am I calling it thr right name? It's the heel stick test.

[blossomgoat]

I would go ahead and do it, honestly. I did some grad school in genetic counseling. It is such a small test and if it's positivie, there's a reasonable course of lifestyle changes to prevent a very BIG developmental issue for any affected child. The payout, should your child have PKU, is so big compaired to the small pain of the test.

[3 ladybugs]

Isn't this test required in some states? I deliver in PA and I thought this was the blood test that goes to the state.

[Kiliki]

Originally Posted by 3 ladybugs Isn't this test required in some states? I deliver in PA and I thought this was the blood test that goes to the state.

I guess it is something we can opt out of. My MW has me sign a paper saying whether we accept it or decline it.

[3 ladybugs]

Originally Posted by Kiliki I guess it is something we can opt out of. My MW has me sign a paper saying whether we accept it or decline it.

I know I didn't sign a consent for it. In fact for DD I was wondering what it was when it was on her isolette and they told me and I figured it was one of the things that I needed to do to bring home DD. DS I didn't even see it but I know it was done.

[Kiliki]

Originally Posted by 3 ladybugs I know I didn't sign a consent for it. In fact for DD I was wondering what it was when it was on her isolette and they told me and I figured it was one of the things that I needed to do to bring home DD. DS I didn't even see it but I know it was done.

We didn't sign anything for it when we birthed DD1 in the hospital, either. BUT she was also born in a different state. So I dunno.

This is my 3rd baby being born here (FL) and all 3 times I've had the option to decline.

[mysticmomma1879]

We declined after our first.

[Kiliki]

Originally Posted by mysticmomma1879 We declined after our first.

Would you be willing to share your reasons? And the outcome?

[Nerissa]

I work in the schools and have seen the results to a kid that didn't get tested and/or parents didn't follow the rules so to speak and it is sad.

I would do the test

[misskira]

Originally Posted by Nerissa I work in the schools and have seen the results to a kid that didn't get tested and/or parents didn't follow the rules so to speak and it is sad. I would do the test

yes yes yes.
I'm a special education teacher. I declined the eye goop, I declined a hospital bath. I understand declining the vitamin k shot. The heel prick was really uncomfortable for my first baby, and my second nursed right through it. But after seeing the results of a metabolic disorder, I personally wouldn't ever decline the pku. My student had mental retardation from the food she ate before they knew what was wrong. She then lived with a very limited diet for years. Eventually she had a liver transplant and can now eat normally, however the cognitive delay is for life.