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We didn't do any testing (PKU etc) Our midwife hates doing them and has a theory that it leads to a harder start and fussier baby. I read through the diseases tested for in my state and decided it wasn't worth it.

-Angela
 

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Refusal in an out of hospital setting is probably pretty high, because parents are more likely to have formed certain opinions. I would guess maybe 75% of mom's I have seen over the years have refused. Anymore I try to give a better informed consent there are certain things that are screened for that can be treated very simply if a baby has it. Most things take some form of supplementation. i know growing up that there was a retarded boy named Fred who had some sort of metabolic disorder, another boy who had Maple Syrups urine disease( I can remember the smell even now).
We also had a baby born 3 or 4 years ago who had low thyroid. I also know a midwife who's grandchild had some sort of disorder that they couldn't figure out and didn't think metabolic because they had had the "state" screening tests- because there are currently about 50 things to test for and most states do 5-11 different of the more common of the rare, this illness wasn't tested for. So it is not a clean bill of health if it comes back ok.
 

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we know a child who has a rare metabolic disease, too (MCAD). if someone wanted to do the expanded newborn screening that tests for a much larger # of diseases, it can be done @ the same time as the PKU....i believe the kit still only costs $25 through baylor. you have to send off for it beforehand. we didn't do it, but just wanted to mention it
to me, this issue is a lot like vaccinations....lots of different comfort levels. we did PKU on day 5 or 6, but only b/c of knowing the child w/MCAD.
 

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My state routinely screens for about 30 things. My traditional midwife will draw the blood and send it in to a state lab. I am not sure about opting out. I think it's rather hard. Especially since it is easy to decline vacs in my state (WI).

I worked with individualsl with metabolic disorders for several year and also cystic fibrosis. After that experience I wouldn't chance it.
 

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From what I understand, Baylor's expanded screen can be done at any age.
 

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We do it. My great grandmother lost 2 babies to that disease where the babies can't digest milk somehow. The name of it escapes me. My thoughts are that a heel prick is not a huge deal and it can bring a lot of benefits.
 

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Quote:

Originally Posted by heket
I thought my mw mentioned that it's a required test for CA (the basic one). Not sure if its the same in other states.
Actually in California you can opt out of testing also.

I have had four homebirths in California.

I agreed to PKU for my #1 since I did not know my FIL's family medical history.

I agreed to newborn testing for #2 since a thyroid and hypoglycemic test were added; since this is a problem in my family, I agreed. #2 tested for a low thyroid, but since the reading was not within the parameters of being treated, nothing was done.

I refused any testing for #3 and #4.

My four children are very healthy, with or without testing.
 

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Quote:

Originally Posted by acsw
My thoughts are that a heel prick is not a huge deal and it can bring a lot of benefits.
That's the way I feel about this.

My first was a hospital birth and my second was a homebirth.

My nephew has developmental delays (he's 7 and doesn't speak, seems autistic, but they don't have an exact name/exact diagnosis for his problem) so my midwife encouraged me to take the expanded test ($80 or so, out of pocket). I was happy to do it.

I knew my DD was healthy. I wasn't worried about the results at all, because I knew all of this stuff was "very rare." But still, I'm glad I took it. I think all babies should take it. I don't see a down side at all. (But if you don't
I don't pass judgement or anything. To each their own. I think parents should just be fully informed about this, sadly they are not, then they should be free to make their own decisions.) Now what if my nephew had never been born? We would have never known about any potential problem in our family.

Quote:
Though parents may not realize it, every newborn baby is automatically tested for a variety of potentially fatal genetic diseases - many of which are easily treatable if caught early enough. But surprisingly, when it comes to genetic screening, not all babies are treated equally. Depending on which state you live in, the number of diseases for which tests are conducted varies widely. And even though additional testing is relatively inexpensive and easily available, many parents are totally in the dark about their options.
Most states test for only a couple (CA tests for 4, Nevada screens for 34, etc...) and the March of Dimes is trying to get all the states to test the maximum/same set of diseases.

There was an article about this issue in the August 4 issue of People Magazine, "A Simple Test Could Have Saved Ben's Life." Ben had the minimum state-mandated newborn screening. The family had no clue that there was an expanded test to take (like I did). Ben Haygood's story

Quote:
Ben Haygood seemed healthy. A happy, active 2-year-old in Belden, Miss... "I treated him like a normal kid, " says his mother, Robin 37. "Because that's what I thought he was." One afternoon he started vomiting in daycare. At home, he was floppy and wasn't breathing. Ben was helicoptered to a medical center. He died within 12 hours of showing symptoms. A month later it became almost unbearable when the Haygood's learned that their little boy's death - from a rare but treatable hereditary disease, MCADD, that kept his body from metabolizing fats - could have been prevented from a simple $25 blood test at birth.
Find out what your state screens for

March of Dimes - Newborn Testing Info

Save Babies Through Screening Info

During pg, my homebirth midwife handed me the brochure for PEDIATRIX SCREENING, a company that does the screening for an additional 50 genetic diseases/inherited disorders. You call them up, before your baby arrives to order the kit $89.95 plus next day shipping $6.95.
http://www.pediatrixscreening.com/
1-866-463-6436

They mail you the kit and you hand it over to your hospital or midwife. 2-3 days after the baby is born, they remove blood from the baby's heel just to get a few drops to submit for the test. This can be done at the same time the California tests are done.

Chances are very high that your baby is perfectly healthy. But this (to me) is a no brainer... it just screens the baby who has X disease... and then they are identified and can be treated early (if it's a disease that can be treated early).

Various Screening Kits - Pediatrix most complete

I believe there is a time limit
... I'm not sure.

My DD was born 3 weeks early! And I forgot to get the pamphlet from her on that visit she talked to me about it, so we rushed the order. My pediatrician's office called to tell me everything came back normal.
 
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