Newborn Tests & Procedures - Page 3

[SUOMI-SOFIA]

I did the PKU only last time...I'm doing the injectable Vitamin K - my very holistic family DO had good explanation for stopping any bleeding trauma...he's seen the worst case senario apparently?!? Ointment - I say no since I don't have VD & that's why they started doing it...

[marlygf]

Originally Posted by wombatclay

Just a random factoid... in New York State the eye goop and vit K are required. They are not covered by religious or personal exemption laws and a hospital, birth center, or homebirth provider is required by law to report a family that declines these interventions (to CPS). What CPS does with the information varies. Now, there are individual care providers who will simply check off the appropriate box and hospitals/birth centers where they are more flexible about how this is handled (the hospital I used with dd1 and dd2 for example would allow parents to apply the eye goop and not "notice" if the parent missed getting it near the babe's eyes). But it is something to be aware of if you are giving birth in NYS. (there is also a province in Canada with a similar "no exceptions" rule regarding eye goop and vit k but you'd have to search Birth & Beyond because I can't remember which one it is!).

Wow, its so strange how laws differ from state to state. Maybe there are more STD's there, or at least they assume? They also must really think its their responsibility to take care of those babies who could possibly have a bleeding disorder. Just strange to me.

We got the Vit K with my oldest and then he wouldn't bleed when they would test his sugars (over 9lbs, dumb stuff) and do the PKU. I was not happy. The poor kid had like 5 pricks in each foot. He also got the bath in the nursery and then was put under the warmer because his temperature dropped too much from the bath. These are the reasons I refuse all this stuff now. My others I haven't done anything with.

We do the hearing test a couple weeks after birth since I have to go somewhere else because of a homebirth and I will be doing the PKU at the ped. office 3 or 4 days after birth since my midwife doesn't cover it in her fee. It's also better to do it a few days later when the milk can actually start reacting with their bodies. Luckily I have a great ped and he thinks its great I homebirth

ldybg610, I would also look into the circ a little more. My boys aren't circ and they are both just fine. Neither has ever had an infection. I had a friend whose son wasn't either and had some infections but his ped assured it wasn't because he wasn't circ. There's a lot of misinformation out there.

[lalaland42]

Originally Posted by Raene

People all feel differently about PKU. For us, the brochure we were given sounded silly, it's an extra ouch for baby, and if we found out there was a problem we wouldn't do anything differently. So...it's unnecessary in our family. I can see how it might be helpful for people who are more pro-meds and pro-docs, though, if they wanted to do something about a problem that might come out.

You do know it is a dietary change, right? If your baby had celiacs, you'd do a gluten-free diet, wouldn't you?

It doesn't sound like you have researched this decision and metabolic diseases very thoroughly.

[melijack1]

This. PKU picked up hypothyroidism in me 31 years ago. Without that test, and the synthroid I have been on since I was 2 weeks old, I don't know if I'd even be alive or normal now. I was born with a completely nonfunctioning thyroid gland. One small, inexpensive, pill every day saved my life, and sustains my life. And like a previous poster said, some of these disorders can be solved by dietary changes which wouldn't require medication. I find it hard to believe this "we would do absolutely nothing different" attitude, because some of the disorders PKU picks up are so easily managed, and so devastating if unmanaged. Please think about this a little further. Your choice is your own, but please, just, do some more legitimate research.

[Talula Fairie]

Did not do vitamin K or eye goop. I did give a short bath in a bowl just after birth.

My midwife will do the PKU in a few days.

And, I think it's really rather irresponsible to avoid the PKU. It's not very invasive, you can just nurse your baby through it most times. Even if you can't, it's pretty important. One heel prick and a few drops of blood and that's it. For something that's potentially lifesaving, I'd say that's definitely an issue where the benefits outweigh the risks.

[veganone]

Originally Posted by Raene

People all feel differently about PKU. For us, the brochure we were given sounded silly, it's an extra ouch for baby, and if we found out there was a problem we wouldn't do anything differently. So...it's unnecessary in our family. I can see how it might be helpful for people who are more pro-meds and pro-docs, though, if they wanted to do something about a problem that might come out.

I've also heard that sometimes positives come up for rare disorders and they're false positives, which stresses out the whole family and ends up being for nothing. Not something I'd really want to go through, but again, that's just me.

You would "not do anything differently" if your child had a life-threatening metabolic disorder that required a special diet? Really?? REALLY??!! You'd rather let your child develop brain damage and possibly die? I'm just floored by this statement.

I also can't understand the fear of "false positives" (which isn't true, it's a screening test, and a "false positive" is actually just a result indicating additional testing is needed). What about the risk of an actual positive?

[preemiemamarach]

Wow. An extra 'ouch' versus death or massive brain damage. Seriously?

I am a retired 12 month EPer. My son (who likely has a metabolic disorder, but one that can't be screened for yet) developed an intolerance to all intact proteins, even in my breast milk, even AFTER I reduced my diet to 4 ingredients in an effort to continue providing him with breast milk. He is still medically fragile, but at 25 months he is ALIVE, and happy. He was starving to death a year ago because he could not digest my milk (or anything else with protein, for that matter).

I simply DO NOT believe that any of you- faced with the situation I was- would have just watched your baby starve to death to avoid testing and medical intervention. It's all well and good to think these things from the comfortable position of having healthy children, but I encourage anyone who thinks the newborn screening tests are 'silly' to mosey on over to the Special Needs forum and ask what it's like to raise a medically fragile/disabled/SN child.

[jackson's mama]

Originally Posted by preemiemamarach

I simply DO NOT believe that any of you- faced with the situation I was- would have just watched your baby starve to death to avoid testing and medical intervention. It's all well and good to think these things from the comfortable position of having healthy children, but I encourage anyone who thinks the newborn screening tests are 'silly' to mosey on over to the Special Needs forum and ask what it's like to raise a medically fragile/disabled/SN child.

:

[thismama]

I refused the PKU with my first. I did it with my second, who didn't cry, but with my first it was that I wanted to avoid the extra 'ouch.' The disorders it tests for, while very severe, are also extremely rare. To make the ever vaulted driving a car comparison, we can say that we should not risk our children's lives for our convenience, shame on us, we should not drive our vehicles, no? I don't think it's omgz end of the world to refuse the PKU test. I would do it in future, but I fail to see the reason for this level of rage really.

[MiamiMami]

Raene- are you confusing PKU with the quad screen done during pregnancy? That's the only thing I can think of that would make your statement make sense.

[marlygf]

I think it was this level of rage because of her choice of words. Some people have experienced it and it can be very scary.

[preemiemamarach]

Originally Posted by thismama

I refused the PKU with my first. I did it with my second, who didn't cry, but with my first it was that I wanted to avoid the extra 'ouch.' The disorders it tests for, while very severe, are also extremely rare. To make the ever vaulted driving a car comparison, we can say that we should not risk our children's lives for our convenience, shame on us, we should not drive our vehicles, no? I don't think it's omgz end of the world to refuse the PKU test. I would do it in future, but I fail to see the reason for this level of rage really.

because metabolic disorders can be devastating beyond what parents of healthy kids could even imagine.

The car analogy doesn't fit here, either (it rarely does), because sometimes you HAVE to use a car (like me, I live in the boonies and we can't sell our house right now and live elsewhere), so it's not always *just* convenience.

So yeah, to me, it's omgz the end of the world for someone to refuse it JUST because it's a millisecond of pain, or because they think it's silly, or because they 'don't do medical interventions'. I still maintain every one of you would move heaven and earth to get help for your child if they got as sick as mine has been.

Maybe my perspective on my child going through a heel prick is different, since he's been through multiple surgeries and more pain than my husband and me combined. and i'd put him through it again if i had to, because he's alive and in my lap right now.

[Pandme]

DDC crashing. It's good to know you have to have actual breastmilk before the PKU can be really considered accurate. I know I had it done with my son but I don't know exactly when and I am going to ask about this at my next midwives appointment (they deliver in a hospital). I learn a lot of great stuff here, thanks for keeping me informed!

(Also, a heel stick just isn't a big deal to me. We had to have Harrison's heel pricked a few times in the days after birth because of jaundice levels and he never even woke up for any of them). I am very natural-minded but a simple heel stick for something potentially devastating is a total no-brainer.

[MamaMonica]

Moved to Birth and Beyond, in accordance with the DDC guidelines.

[akat]

I think the rage is because she said she would do nothing if the screen revealed a problem - i.e. would let her baby become brain damaged/die rather than change diet. As fun as it is to let out some righteous anger on a stranger online, I think that she is simply confused. She has misunderstood what the PKU test is for, and has it confused with, probably, the NT screen or something like that. Admittedly, we should all be a careful about making hasty assumptions/mistakes like that, but it's different from her meaning that she would watch her baby starve and die. Hopefully her care provider will figure her misunderstanding out and enlighten her, if she doesn't come back to check this thread.

Aside from that, I have heard that some of the disorders in the test are appropriate right away, although some of them require a day or week or whatever, maybe that's why they do it once right away and once later? Anyone know the real deal on that?

Does anyone know if I can refuse Vit. K and eyedrops in Michigan? I plan to refuse both and delay the Hep.B til pre-puberty, but do the PKU.

Can more people elaborate about refusing the bath? So far I saw these reasons: someone retracting foreskin, the baby getting cold and then 'needing' to be warmed on a warming table, and taking away the smell of the gunk? Are there other reasons, too? This is the first time I've heard of this one, it wouldn't have occurred to me. I figure, also, I wouldn't want to delay nursing and skin-to-skin for a bath.

[marlygf]

I don't know of more reasons to refuse the bath but those are enough for me. Having my baby taken away for longer than they need to just doesn't make sense. Like I think I mentioned, I didn't even bond with my first until he was 6 months old. I need that time right after and anything to interfere with it is not good. Also, there really isn't a whole lot of aneed for a bath. it's not like they're dirty. I mean wipe off any blood, but it just seems to silly to wash them right after.

[lalaland42]

Well DD was covered in green mec and it was yucky so I went with the bath. Where I had DD, everything was done in-room or I wouldn't have allowed it. To each her own in this case.

[Veritaserum]

Originally Posted by NaturalMindedMomma

only did the PKU.

no bath, no circ, not vaccines, drops, or ointments.

:

[Bluegoat]

We aren't doing the eye drops or Vit K, and we wouldn't circ. I don't think they give a hep B vaccine here at birth - I don't remember it from my previous pregnancies.

I will do the hearing test and the metabolic test - although metabolic diseases are rare, they don't show up until they have caused damage, and it's not a dangerous test.

I will have the baby get a bath, even if I do it in the room with towels. I like to try to clean off any resistant or virulent bacteria which might be in the hospital before we go home. It doesn't mean that it has to be done right after the birth, but shortly before leaving hospital, I think, is a good idea.

[orangebird]

Raene, would you please come back and clarify this? It has some of us quite confused and concerned.

Originally Posted by Raene
People all feel differently about PKU. For us, the brochure we were given sounded silly, it's an extra ouch for baby, and if we found out there was a problem we wouldn't do anything differently. So...it's unnecessary in our family. I can see how it might be helpful for people who are more pro-meds and pro-docs, though, if they wanted to do something about a problem that might come out.

I've also heard that sometimes positives come up for rare disorders and they're false positives, which stresses out the whole family and ends up being for nothing. Not something I'd really want to go through, but again, that's just me.

You would not treat your child if the screening led to the diagnosis of one of the diseases?