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Old 02-11-2013, 07:57 PM   #48
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JennTheMomma
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Re: anyone decline the PKU?

Quote:
Originally Posted by ktmelody View Post
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.
I pointed out in a previous post that at the hospital here they ONLY test for PKU within the first 48 hours, and then ANOTHER heel prick is done 1 or 2 weeks later in the Pediatricians office for the other screenings. You asked why someone would decline the PKU, this is why they declined it, because they were not carriers for PKU. You did not ask why people declined ALL the screenings, which they don't, they decline specifically PKU since they cannot pass it onto the baby.

Quote:
Originally Posted by PoshPants View Post
well given there are so many other similar conditions, if they did that vs the baby be tested that is just plain stupid. Bad advice they were given and I hope no one reads that advice and does the same.

This link has newborn screening success stories, there are also many stories that didn't have a happy ending.

http://www.fodsupport.org/newborn-stories.htm
They declined specifically the PKU test, because they are not carriers and cannot pass it onto their baby. There is another screening for the other disorders/illnesses/etc that is seperate to the PKU in the hospital that my friends deliver at. I am not talking about the combined test that most hospitals use, I'm specifically talking only PKU.

ETA: And also for some homebirth Midwives they do specifically PKU as well after the birth, and then parents take baby into the Pediatricians office for the other screening test. When I had ds2 at home I did PKU at home and then had to take him into the hospital lab for the other screening (which my Ped said could be done anywhere from 24 hours to 1 month after birth). However, the MW I'm using this time is able to do the entire thing at home a few days after birth.

Last edited by JennTheMomma; 02-11-2013 at 07:59 PM.
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