anyone decline the PKU?

[aylasmommy]

Originally Posted by ktmelody But the pku test involves over 30 endocrine, metobolic, hemoglobin and cystic fibrosis screenings. Not all are genetic. It isnt just testing for pku any more (there may be states that dont include all the screenings but all states test for more than pku)

Exactly. We are a non vax family that only goes to the doc when we can't fix things ourselves. This test is one of those things that has so many reasons too and none against.

[z2akids]

Originally Posted by JennTheMomma It's not state wide, it's only the local hospital that does it this way (that I'm aware of). The hospital in the bigger city an hour from here does it all on day 2 with one heel prick, and then another hospital about 45 minutes from here does it all on the same day too but 2 different pricks. It varies.

I wonder why your hospital would tell a lab not to run the full series of test required by your state? Given that it is one heel stick with only a drop or two of blood smeared on a card. The lab is where the tests are run. Why on earth would one hospital tell the lab not to run the tests required by your state? It makes little sense that they wouldn't follow your state's standard of care. It would leave me wondering what other standards of care the hospital is failing to meet.

[ktmelody]

Originally Posted by z2akids I wonder why your hospital would tell a lab not.to tin the full series of test elrequired by your state? Given that it is one heel stick with only a drop or teo of blood smeared on a csrd. The lab is where the tests are run. Why on earth would one hospital tell the lab not to rin the tests required by your state? It makes little sense that they wouldn't follow your state's standard of care.

I agree. These are state mandated tests. You have to sign a waiver to opt out. Its not based on hospital policy.

A hospital has to follow the state procedures. they all go to a main lab for this panel in the same or a nearby state. (They dont go to the closest blood lab)

In my state and neighboring states all newborn screens go to the main lab in oregon.

[FernHollow]

I have gone against the grain on many birthing choices - declined some testing while pregnant, had 2 home VBACs (one of them unassisted), have declined vaccines, skipped the vit. K and eye goop, etc....but there is no way I would skip this. There is no logical reason to decline it. There are serious consequences if your child has any of those conditions and it is one tiny little heel poke to find out. I totally agree that it is most accurate with the second testing after they have had milk but we do both because the idea is if the first test comes back with an issue you hopefully you catch it sooner. I know multiple very laid back midwives and they have all been pro-PKU. Seriously, please do the testing. :-)

[JennTheMomma]

Originally Posted by z2akids I wonder why your hospital would tell a lab not to run the full series of test required by your state? Given that it is one heel stick with only a drop or two of blood smeared on a card. The lab is where the tests are run. Why on earth would one hospital tell the lab not to run the tests required by your state? It makes little sense that they wouldn't follow your state's standard of care. It would leave me wondering what other standards of care the hospital is failing to meet.

They do run all the state mandated tests. I've said more than once that they do two heel pricks, one for PKU 2 days after birth and another 1 or 2 weeks later for the other screenings. They are not skipping tests.

[z2akids]

Originally Posted by JennTheMomma They do run all the state mandated tests. I've said more than once that they do two heel pricks, one for PKU 2 days after birth and another 1 or 2 weeks later for the other screenings. They are not skipping tests.

I wonder if perhaps there is some misunderstanding. The tests are usually just referred to as PKU although the card we use from the lab to put the sample on is automatically run through our state's complete newborn screening testing. A hospital would have to specifically tell the regional lab not to run the tests.

States normally have these tests run 24-48 hours after birth. The majority of these tests are perfectly valid in that time frame. The weird thing is that the one test you say they do run is the one test that is only between 90-98% accurate in babies that young. Why on earth would the hospital do that one and skip all of the other test? Given that very few babies spend more than 48-72 hours in the hospital, the standard of care is to run all of the state mandated tests from that single blood draw. Waiting until 2 weeks means that a significant number of babies born in that hospital will never be tested. I don't doubt you. I just honestly don't understand why the hospital would have a lab not run the tests- especially since there is no need for a separate blood sample. The hospital is violating the standard of care not running the required tests from that initial stick (absent a refusal by the parents). States want to screen every newborn. Letting babies leave without those screenings means that many never will be. There is no reason for a hospital to have a lab not run the tests that they are set up to run.

[mama1980]

Originally Posted by ktmelody This doesnt make sense.... NOT all 29 of the tested for conditions on the ONE test are genetic. When the test is repeated at 2 weeks old the same 29 conditions are tested for. Just because a parent doesnt have a gene for a certain disease that is tested for does not mean their baby cant have the disease. One that is screened for in all states is Congenital adrenal hyperplasia. It is not passed from parents and can make a child very sick. Its random. Without the newborn screen you would never know your child had it until it caused an issue that isnt reversible.... Pku is only ONE condition that is tested for on the pku test. And BTW 90 to 99 percent of babies with one of the 29 conditions tested for is positive for the condition with the first screen done at 0-24 hours old. 99 percent of kids with pku are positive on their first screen.

This. Am seriously baffled as to why this thread/question even exists. Declining this test is dangerous grounds for CPS involvement should a baby have a congenital disease.

[PoshPants]

Originally Posted by JennTheMomma They do run all the state mandated tests. I've said more than once that they do two heel pricks, one for PKU 2 days after birth and another 1 or 2 weeks later for the other screenings. They are not skipping tests.

1-2 weeks is too long. A local lab doesn't do this test either, esp a local lab in a small town.

Originally Posted by mama1980 This. Am seriously baffled as to why this thread/question even exists. Declining this test is dangerous grounds for CPS involvement should a baby have a congenital disease.

Sadly there have been cases of multiple child deaths due to undiagnosed metabolic issues. That is why the big push for testing. And it's free!

Sadly if a baby has one of the conditions, likely it will be a far different case vs child abuse and it goes UN-treated.

There are even adults with mild cases of these disorders only finding out due to a child having it!

[JennTheMomma]

I just talked to a nurse friend and she said that over 99% of the babies born in the area get both heel pricks, and the very few who don't don't do it for religious or philosophical reasons (not sure exactly what the reasons are). She also said that you can do it at the same time rather than two different times, just that both were an option and having 2 started from the main hospital to which this one stems off of it.

[an_aurora]

I've always done it. I had two home births and my MW did it both times on her 2-day visit and again at our 2 week visit.