New Posts  All Forums:Forum Nav:

Pku?  

post #1 of 21
2/1/08 at 6:42pm
Thread Starter 
Hello! Well, I had my baby last friday (25th)!! yay! We had a girl, at home in the water. I got to "catch" her myself. Her name is Aisha Lea, weighed 8lbs 2oz and is 100% sweetness.

Anyways, here's my question for you ladies. Is the PKU/newborn screen absolutley necessary? Has anyone ever opted out of it? I'm not sure exactly what it is, but I'm not sure where to go. With my other 3 we lived in a different city and things were done a bit different there.

Thanks!

Andrea
post #2 of 21
2/1/08 at 6:46pm
It's required here in Michigan, so all my kids have had it.
post #3 of 21
2/1/08 at 7:45pm
We opted out with dd. Haven't decided for this one yet.

-Angela
post #4 of 21
2/1/08 at 8:59pm
It is required here in WA but I cannot imagine why anyone would want to opt out of it. It can prevent tragedy. It can save your child. If your child has one of the disorders your state tests for, knowing sooner rather than later can prevent brain damage and/or other complications. In many cases, the disorders are very easy to take care of and prevent damage from happening but you won't know if you do not test.

To me this is very, very important test. Yes, baby cries. Better than brain damage.

You probably can go to any lab. If you do not know where to go, the hospital nearest you probably does. You can call and ask them. Or if you have a doc, he or she can tell you. Did you have a midwife? My midwife did the first one.
post #5 of 21
2/1/08 at 9:03pm
In CA it only has to be offered; not done.
post #6 of 21
2/1/08 at 9:12pm
I would find out what it is before you opt out of anything. Your midwife should be able to help you get it done.

Info for Alberta is here - they'll test for 16 congential metabolic diorders plus cystic fibrosis
http://www.health.gov.ab.ca/public/N...alBrochure.pdf

I wouldn't opt out. Cretinism is SO unfashionable these days. And untreated PKU causes autism.

Pretty much everything they test for is going to allow you to prevent brain damage or death to your baby.
post #7 of 21
2/1/08 at 9:27pm
My CPM offered it. She did at one of the post-partums. He cried, but just a little- and I nursed him right afterwards. It's an important test, IMO.
post #8 of 21
2/1/08 at 9:29pm
Here are some links you might find helpful:
http://www.givingbirthnaturally.com/pku-test.html
http://children.webmd.com/phenylketonuria-pku-test

No way would I skip the PKU test. Yes, it was awful. (In my case, we had our first test done by a midwife who was NOT, unfortunately, skilled at heel sticks. When done by a nurse, it was much easier.) But far less awful than brain damage.
post #9 of 21
2/1/08 at 9:45pm
We skip it but then again, we don't do any routine testing. Ever.
If there were any warning signs or risk factors of anything I might consider it but otherwise, nope! We did it with the first babe and after about 10 minutes of her squeezing his heel and pricking him 3 times, the lab sent it back that there wasn't enough blood for the tests. There was no way I was going through that again.
post #10 of 21
2/1/08 at 9:57pm
Suzy, what are the warning signs of galactosemia and phenolketonuria and how long do you have after they appear before there's brain damage?
post #11 of 21
2/1/08 at 9:57pm
Pinky, the point is that there are not always risk factors or warning signs. I am all about choosing what you do with your own kid but this test literally is tops my list of the most important test/procedure you can do for your newborn. That is why it is law in so many states. It is that important.
post #12 of 21
2/1/08 at 10:46pm
I'm in Ontario and we can opt out if we want to.
I chose to go ahead with it. I have issues with people injecting things into newborns, but a little heel prick I am OK with.
Our midwife did it on the 4th PP day in our home. I nursed him while she did it and he barely fussed.
post #13 of 21
2/2/08 at 12:07am
Please don't skip the PKU test. I have a cousin with PKU, and no one in our family was even aware we are carriers. It was caught 10 days after his birth as a result of a typical newborn screen. Unfortunately, PKU's symptoms don't become readily apparent until several months or even years after birth, and by then, the resulting brain damage is irreversible. My husband wanted us to opt out as "no one in my family has ever had PKU; it's just your family that has the problem." I told him that no one in our family had PKU, either, until Joseph was born. With PKU, there are no "indicators" of a problem, and even with no family history, the disease can still be present ...

The only time I would ever opt out of a PKU test is if my husband and I were both genetically screened to determine if I/we are carriers.

Just my two cents ...
post #14 of 21
2/2/08 at 1:16am
Well, I don't weigh in with a firm stance on whether it's "essential" or is OK to skip. Yes, the problems (if undetected) can be devastating. And it is all the more heartbreaking b/c if the condition had been known, it can be treated with diet. However, given the extreme rarity of the condition, I think it's fair that the choice remain with the people. Not everyone has to agree with my healthcare choices and I don't have to agree with theirs.

If I had known more about the test's effectiveness, I would have declined it temporarily with my children. Meaning: in my province, the test is done when the newborn is 48 hours old. In most cases, this means Mom and Babe are still in hospital. The government sets it up that way so that virtually everyone gets tested. Easier to test while you've "got them" than get parents and babes back for testing later!

Unfortunately, the PKU test is not as accurate at that time. Apparently, it is better done after a week or two - once the milk supply is in and breastfeeding is well established (yes, that's assuming breast feeding). I know this only b/c one of our twins required a second test. He scored in the grey area on the first test. (He turned out to be fine). So he went through two painful/scary heel prick/squeeze sessions with the first one being completely useless.
post #15 of 21
2/2/08 at 4:09pm
Quote:
Originally Posted by Novella View Post
Unfortunately, the PKU test is not as accurate at that time. Apparently, it is better done after a week or two - once the milk supply is in and breastfeeding is well established (yes, that's assuming breast feeding). I know this only b/c one of our twins required a second test. He scored in the grey area on the first test. (He turned out to be fine). So he went through two painful/scary heel prick/squeeze sessions with the first one being completely useless.
: Yup. Assuming you're bfing, I'd wait until it's more accurate (and more likely to get a better stick result) We had some trouble getting enough blood with ds, too. This was when he was 4 days old. We're good clotters in this family I bf'd him and he didn't really notice the sticks.

I opt out of most testing pre and postnatally. After finding a friend in playgroup, whose daughter tested positive, it's a test we won't skip. We'll be exclusively bfing again, so I'm not worried about immediate effects if it were to come up positive, too. It's such a manageable condition, if you are aware of it. But, it's devastating if you don't know about it.

Best of luck to you and your baby!
post #16 of 21
2/2/08 at 10:48pm
We do it at 1 week of age at our birthing center. We wrap the baby's foot with a warm, wet cloth and let it sit for about 10min or so. Then we ask Mom to nurse baby and let the foot hang down. This almost always seems to work just great.
I hate it when I see babies in the hospital laying on their backs with their feet up in the air being wrung tightly and poked repeatedly for a sample. Ugh.
post #17 of 21
2/2/08 at 10:48pm
We do it at 1 week of age at our birthing center. We wrap the baby's foot with a warm, wet cloth and let it sit for about 10min or so. Then we ask Mom to nurse baby and let the foot hang down. This almost always seems to work just great...usually with little crying from the baby.

I hate it when I see babies in the hospital laying on their backs with their feet up in the air being wrung tightly and poked repeatedly for a sample. Ugh.
post #18 of 21
2/2/08 at 10:50pm
My midwife did it at 2 days and then I went to lab at 2 weeks for another round. That is the way it is done in WA state with most babes. Cuts down on problems stated above.
post #19 of 21
2/2/08 at 11:45pm
Quote:
Originally Posted by JackieM View Post
Unfortunately, PKU's symptoms don't become readily apparent until several months or even years after birth, and by then, the resulting brain damage is irreversible.
The test also screens for other metabolic disorders that don't present symptoms until damage has been done. For that reason, we chose to have the test done (I think it's the law here, but you can usually get around that). My dd needed multiple heel sticks because of jaundice anyway; and when done by a skilled nurse, they were not a big deal. We'll do the PKU (& other included tests) with this baby as well.
post #20 of 21
2/3/08 at 3:45pm
Thread Starter 
Wow, thanks for all the replies. I did end up taking Aisha in to the hospital to get the screen. I mean, I've had it with all my kiddos, but it was never something I had to do, it was either done in the hospital or the midwife came to my house to do it. This time around we had a lay-mw from the states so it wasn't offered, so I had to actively seek out the screen.

I called the health unit and they normally would send a nurse to your house to do it, but they were busy, and they said it had to be done in the first 7 days, so I just took her in.

BUT..... it was horrible, my poor babe... She really doesn't cry at all, so to see her in that pain was not my cup of tea...

Andrea
New Posts  All Forums:Forum Nav:
  Return Home
  Back to Forum: Homebirth
This thread is locked