Any thoughts on the newborn screening test?

[stormgirl]

I'm wondering about the newborn screen test, wondering if it's something we should do or not. I have some paperwork from the midwives, and I'm just not sure.

What are you doing?

[meggles]

We're doing it even though we declined most other tests. There are a few things that can show up on the newborn screen that can be minimized by knowing about them early on and taking the right precautions. I do not like the idea of sticking my precious baby with a needle, but my mw is very gentle and has done hundreds of these tests. I might have to re-think having it done if I had to take the baby into a hospital or lab. Since it can be done in the comfort of our home, could potentially be useful, and doesn't have any real risks that I can see, I figure we may as well do it.

[blastomom]

I am very pro the newborn screening tests--I see them as very different than vaxing, "mandatory" eye-goop, etc. Yes, the chances that my child will have any of the conditions that are screened for are very slim, but the benefit to catching them early are so great that I think it is definitly worth the needle stick.

[spsmom]

Originally Posted by blastomom

I am very pro the newborn screening tests--I see them as very different than vaxing, "mandatory" eye-goop, etc. Yes, the chances that my child will have any of the conditions that are screened for are very slim, but the benefit to catching them early are so great that I think it is definitly worth the needle stick.

yeah, what she said!!!

[wendyk]

I'm on the same boat here. Those tests screen for things that are manageble if known, but can be devastating if discovered too late.

[The Firebird]

I think that I am out of the loop ... I don't recall anyone talking to me about newborn screening tests ... are we talking right at birth or shortly after? And what are we testing for? Just wondering. Though if it is just a test ... and not pumping anything into baby then I would agree that it makes sense to have them done. I guess I should talk to my midwife about all this though ... right?

[MacKinnon]

We'll be doing it too... but not most of the other stuff (only Vit. K). Although, The Firebird, I don't know much of what they test for.

[skueppers]

Exactly what they test for differs from state to state. Examples include:

Phenylketonuria (which, for accurate results, should be repeated two weeks after birth) -- Inability to process phenylalanine. Causes brain damage if not caught early.

Galactosemia -- Inability to break down galactose. Causes blindness, brain damage, death. Children with galactosemia cannot consume milk/dairy products, including human milk.

Congenital Adrenal Hyperplasia -- Serious hormonal deficiencies. Brain damage and death in first month or so of life common.

For more information, visit:

http://genes-r-us.uthscsa.edu/

My own feeling is that while these disorders are rare, since failing to detect them as soon as possible can cause very serious negative consequences for the baby, it's worth doing the tests. They are performed by taking a few drops of blood from the baby's heel.

[Electra375]

I spoke with my pedi about these, they won't see us without them up to 6 mo of age. She also told me that given my ds2's autoimmune condition she would highly suggest that I do the screening tests. She gave me a way out, but she also respectfully asked me to research it.

I researched it and decided that given ds2's condition we should do the screening test. However, there is no way I want the state involved and newborn screening = enrollment in the state's data base, um, no, not in this lifetime.

I continuted researching and found a private company to do it and it just so happens to be the company my midwife uses when mama's request such a thing. She comes back to the house on day 5 or 7 to collect the sample on the card for the tests.

I have a thread in vaxes on this.

[MajaKatrina]

It saved my oldests life!

She was born with congenital hypothyroidism(no thyroid glands) which left untreated will cause severe mental delays and physical issues, she was started on meds at 13 days old due to it being caught on the NB screening.

Catherine

[tempestjewel]

We will be doing it too. Unlike a lot of other newborn procedures, I don't really see a huge downside to this one, other then the needle stick.

[beebs]

following on what skeuppers posted above -

isn't there something about how the test isn't really accurate for some of the disorders until a week after the baby's born, i.e. after the milk is in and the digestive system has a chance to work? but then again i heard a story about a mom who's daughter had galactosemia and that had to be caught before the milk came in or else she would have been in trouble.

so, if we're gonna test for the for purposes of catching some of these disorders, shouldn't we do it twice, once early on and once later? i don't really know either way. i feel like i should do it twice or not at all, if i wanted to be thorough about it.

[stormgirl]

My midwives test on day 3, I think. Or is it 2? I don't know. They don't do it on the arrival day, though, which makes it seem a little less traumatic than, "Welcome, prick!" We ordered the test, but I was curious what everyone else was doing, but was also leaning toward it.

[peaceful_mama]

I'm pro-test, as I really don't see a big negative side to it. I just don't want them to do it IMMEDIATELY....I will have it done before we go home, I heard last night at LLL it might be required anyway. (I know I could decline, but I think in this particular instance, the downside is some pain for the baby, the up-side is she could have it while nursing or anything, and if she were to have any of the screened-for things, I'd be avoiding lots of bad with that couple mins of pain.)

[janerose]

We're also having the test done, but declining everything else except the hearing test.

It does depend on what state you're in. We're in NY and they test for over 50 things. The MW gave me a brochure at the first appointment. Also, if it can be waived depends on the state you're in as well. In NY the testing is more or less mandatory. Our ped had no problem with us skipping the Vit K, eye goo or vaxes, but said it would have to be reported to CPS if we skipped the testing (not his idea mind you, just what he has the do by law). So that's also something to take in mind.

I agree that there seems to be very little downside to the testing. I view it the same way I view the 1 yr lead screening.

Oh, and yes, with DD1 they did it on the day we were discharged. So, 2-3 days after birth & DD nursed through it all. Didn't phase her a bit.

Holly

[skueppers]

Originally Posted by beebs

isn't there something about how the test isn't really accurate for some of the disorders until a week after the baby's born, i.e. after the milk is in and the digestive system has a chance to work?

I know that's true for phenylketonuria, but I don't know that it's true for any of the other disorders they test for. Around here, they repeat the PKU test at the pediatrician's office a couple of weeks later.

[Shazer]

Can any of you ask your midwives what brand of tests they use? I ordered one from Baylor Health Systems and the blood sample must be certified by a doctor's signature. My MW said she would do the test, but it would make it so much easier to have a test that can just be sent in without having to go through the pediatrician or a health department.

[Cinder]

Originally Posted by blastomom

I am very pro the newborn screening tests--I see them as very different than vaxing, "mandatory" eye-goop, etc. Yes, the chances that my child will have any of the conditions that are screened for are very slim, but the benefit to catching them early are so great that I think it is definitly worth the needle stick.

I agree, though we won't do them till the 2 week check up at the peds, from everything I've heard it is much more accurate to do them after you know they have digested some non-colostrum food...they did my daughters at like 4 hours old, and we ended up re-doing them later since it wasn't considered accurate at all and she was diagnosed as failure to thrive.