PKU test? - Page 2

[Llyra]

Originally Posted by *MamaJen* 

Even if the occurrence of PKU is 1 per 10,000, they also test for about 20 other metabolic disorders in the newborn screening, so the total risk is going to be higher than that. It's frequently referred to as "the PKU test" but there are a lot of disorders in the screening.

Originally Posted by Vaske 

Yes, you can have the screening done privately.  I believe it costs about two hundred dollars.

I found some stats for my state this morning...looks like there is roughly one confirmed case of PKU for every 10,000 births.

Here in NJ, they test for 54 disorders. Some of them are extremely rare, and some of them more common and well-known-- for example, sickle cell anemia and cystic fibrosis. I also found a stated policy that said that here in NJ, samples are kept for 23 years, and are only used for other purposes with either parental consent or a court order. One wonders why they're keeping them, of course-- but I still think I'd get the screen again.

[MsBlack]

Where I live, when one or more tests on the Newborn Screen comes back positive, NO ONE tries to force families into treatment for the disease.  False positives are not that common, but when they occur the FIRST thing requested is a re-test.  If your child should test positive for anything on the Newborn Screen, just be sure to request a retest before accepting treatment--unless of course, your baby is already symptomatic.  PKU disease, Galactocemia, these are early-onset and you would be seeing symptoms not so long after birth.  Many of the other disorders don't manifest symptomatically until weeks, months, or even more than a year later.  I don't know all the names, but for instance there is a fatty-acid disorder that would not tend to manifest until your baby is sleeping through the night, and therefore fasting for an extended period.  And so forth.

Go to March of Dimes website, search Newborn Screening and you'll learn lots more!

As for blood samples and Big Brother having all of our DNA...well I can't really think too much about that or have any paranoia for the possibility.  Not that I doubt it!  Just that in this era, yeah, Big Brother is watching--with ever-more-secret and sophisticated methods.  I decided it's just a norm of our lives and pointless to worry.  No such thing as privacy anymore, and if they want your DNA they're going to get it one way or another.  But that's just me.

[greenmulberry]

I had a relative that had a baby that tested positive for PKU disease, which was confirmed.

Nobody was breaking down the door to monitor the treatment received, but they did provide a lot of education on how to handle to disease and well as advice on notifying family members.

Because it is inherited disease, a couple of my relatives also decided to get genetic testing to see if they were a carrier. You have to get the gene from both parents to be affected, so families can carry the gene for many generations and not know until someone has a baby with another carrier and they both pass on the gene. Luckily, my father was not a carrier so he didn't pass it on to me.

Overall I think the whole experience was very positive and a new baby was saved from a lifetime of horrible and permanent mental and physical damage because it was caught early.

[CBEmomma]

We did the PKU for each child, even our homebirth baby. We will do it for all children. In our state they test for over 50 different things, and I did know someone who had a child who had a baby that came back positive for one of those things.

[mylilmonkeys]

As an apprentice, I have done the heel stick a number of times.  We preferred to let the baby cry, as the increased heart pumping helps the blood to flow faster.  It is really difficult, sometimes, to get all the blood needed to fill the sample card, and they will send the card back and insist on a retest if there is the slightest spot not covered, or if it takes too long to fill the sample, allowing areas to dry before it is filled.  No one likes to retest just because the first test was refused for one of these problems.  

[Vaske]

Here is a thread on MDC about a baby receiving a false positive for the galactosemia screening, and being forced to stop breastfeeding for days and days until more test results could come back. 

[Peony]

I do it but wait a few days. I did it at the pedi office with DD2 and my MW came out and did it with DS.

[MsBlack]

Originally Posted by mylilmonkeys 

As an apprentice, I have done the heel stick a number of times.  We preferred to let the baby cry, as the increased heart pumping helps the blood to flow faster.  It is really difficult, sometimes, to get all the blood needed to fill the sample card, and they will send the card back and insist on a retest if there is the slightest spot not covered, or if it takes too long to fill the sample, allowing areas to dry before it is filled.  No one likes to retest just because the first test was refused for one of these problems.  

It sounds to me like you have been using a far less effective method of blood collection than you could be.  Let me suggest the following, so you can prevent a lot of baby distress and have an easier time with the collection yourself:

1. Use a neatnik or tenderfoot lancet--these are small blades, not pin-hole type.  The blade mades a shallow slice instead of a tiny hole--a slightly larger wound that bleeds more initially.  The babies clot pretty quickly nonetheless once you're done.  These blade-lancets cost only a few dollars and are well worth it all around!

2.  Warm the baby's foot/lower leg thoroughly before using the blade-lancet.  A heating pad is a great tool for this--just fold the heating pad around the baby's leg for several minutes while mom holds baby comfortably.  A warm leg will make the blood flow more freely, no need whatsoever to cause the baby more distress just to get the blood pumping well.

3.  Mom should hold the baby upright against her shoulder (like when burping a baby, facing mom's shoulder).  This way you will also have gravity's help with sufficient blood flow--and baby will be in mom's arms in a comfortable position, also reducing baby's distress from the small pain of the lancet.

4. Have your stuff all ready, so that the instant you make the cut, you are ready to catch blood.

Since using this method, very few babies cry--and those that do, cry very little and generally are settled before the blood is done being collected.  Even those that cry a bit all through, do not cry nearly as hard, and are soon settled the second you stop messing with their leg.  All that is needed is several drops of blood--this can collected within 30-60 seconds, depending on how freely the baby bleeds.  It is only rarely necessary to gently milk downward on baby's calf to promote a little more flow; only rarely necessary to use an alcohol wipe over the cut to interfere with clotting and thus promote a little more flow.

For the parents: insist that your provider use a blade lancet, not a point.  You can buy one with your birth supplies if you are having a homebirth.  Hold your baby during the process, make sure your baby's leg is nice and warm.  If your providers don't already do the things suggested above, then tell them this info first so they understand what you want---those who are unaware of this method may be quite pleasantly surprised to learn something new that prevents baby's distress during the collection.

Having once used the point-type heel stick--and not warming, the leg either--I can tell you, some babies cried so hard!  I hated that I was distressing them and of course babies and parents weren't too happy either.  Much nicer for everyone to use a method that causes less pain, requires less prodding/milking of the foot to get the blood.  The point-type stickers are great when you only need a drop or 3 of blood....but the blade lancets, used on a warmed leg, are by far superior when you need more like 12-15 drops for the collection card.

ETA:  The test is best done at about 3-4 days pp, when the milk is in or starting to come in.  Earlier testing may not be conclusive and will just need to be done again.  It is done at 24-48hrs in the hospital MAINLY because that is when they have you/baby on hand--and the possibility of false positives is why they may want the test repeated a 2nd time later.  Also--if for any reason the screening is not done by 3-5 days pp, then it's best to wait until 2wks, IMO.  That is mainly because baby's clotting factors have reached their peak at 8days; it can be much harder to get a good blood flow at/around that time.  If you wait til 2wks, then clotting factors have backed off a bit and testing is easier.  Of course, if baby seems symptomatic (of anything, really) then it's best to get med eval ASAP, no matter what the baby's age.
 

Edited by MsBlack - 12/16/10 at 6:24am

[Llyra]

Originally Posted by Vaske 

Here is a thread on MDC about a baby receiving a false positive for the galactosemia screening, and being forced to stop breastfeeding for days and days until more test results could come back. 

While I understand that interrupting breastfeeding is far, far from the ideal situation, especially when it turned out to be unnecessary in the end-- I would rather play it safe in that situation while I waited for more tests to confirm the result. Screenings are not perfect-- certainly we get false positives sometimes. But would it be better to allow babies with these conditions to go undiagnosed long enough for permanent damage to be done?

[MsBlack]

Originally Posted by Vaske 

Here is a thread on MDC about a baby receiving a false positive for the galactosemia screening, and being forced to stop breastfeeding for days and days until more test results could come back. 

While I understand that interrupting breastfeeding is far, far from the ideal situation, especially when it turned out to be unnecessary in the end-- I would rather play it safe in that situation while I waited for more tests to confirm the result. Screenings are not perfect-- certainly we get false positives sometimes. But would it be better to allow babies with these conditions to go undiagnosed long enough for permanent damage to be done?

ITA.  Short term discomfort is worth it when possibly dealing with a such a serious issue. 

[Vaske]

I would characterize what the mama and baby on that thread went through as more than "short term discomfort", and in any case, my aim is not to dissuade anyone from screening tests, only to point out the risks of screening so everyone can make an informed decision for themselves.

People are terrible at assessing risk.  I have a book, True Odds, that starts out with the author's wife being offered an amniocentesis to check for Down's Syndrome.  They declined when they realized that the risk of miscarriage from the amnio was greater than the risk of the baby having Down's (and that they would keep the baby, in any case).  They connected these dots entirely on their own; the medical people were of absolutely no help in weighing cost versus benefit.

In my state, there's about a 1 in 800 chance of being diagnosed with anything as a result of newborn screening--not all of these are fatal conditions, and not all would go undetected without screening.  That makes forgoing the screen safer for the baby than homebirth, and also safer than amniocentesis (which is now being widely offered to pregnant women).

False positive rates for screenings in general can run as high as 90%, nine false positives for every true positive.  And false positives have definite costs--people tend to put too much faith in tests, mistake test results for actual reality, and jump into making decisions without seeking confirmation first.  False negatives can happen, too, and give a false sense of security.  (Lowering the false negative rate as much as possible tends to increase the false positive rate, and vice versa.)

There's also a lovely statement from my state health department's web site, encouraging homebirth midwives to put pressure on parents who want to opt out of the screening.  If this was only about health, the health department could choose to remain in *real* dialogue with the public, and they could easily change their policies to address the concerns of parents like me.  Really, if they would just mail the sample card back to us when they finish the test, that would be enough.  I see an ugly future coming, and I can't stop it, but I can at least tell people to watch out for it.

Edited by Vaske - 12/16/10 at 9:50am

[MsBlack]

Originally Posted by Vaske 

I would characterize what the mama and baby on that thread went through as more than "short term discomfort", and in any case, my aim is not to dissuade anyone from screening tests, only to point out the risks of screening so everyone can make an informed decision for themselves.

People are terrible at assessing risk.  I have a book, True Odds, that starts out with the author's wife being offered an amniocentesis to check for Down's Syndrome.  They declined when they realized that the risk of miscarriage from the amnio was greater than the risk of the baby having Down's (and that they would keep the baby, in any case).  They connected these dots entirely on their own; the medical people were of absolutely no help in weighing cost versus benefit.

In my state, there's about a 1 in 800 chance of being diagnosed with anything as a result of newborn screening--not all of these are fatal conditions, and not all would go undetected without screening.  That makes forgoing the screen safer for the baby than homebirth, and also safer than amniocentesis (which is now being widely offered to pregnant women).

False positive rates for screenings in general can run as high as 90%, nine false positives for every true positive.  And false positives have definite costs--people tend to put too much faith in tests, mistake test results for actual reality, and jump into making decisions without seeking confirmation first.  False negatives can happen, too, and give a false sense of security.  (Lowering the false negative rate as much as possible tends to increase the false positive rate, and vice versa.)

There's also this lovely statement from my state health department's web site:  "Since homebirth practitioners really know the families they care for, they may choose to remain in dialogue about the advantages of screening rather than move to quick signing of the opt-out forms."  If this was only about health, the health department could choose to remain in *real* dialogue with the public, and they could easily change their policies to address the concerns of parents like me.  Really, if they would just mail the sample card back to us when they finish the test, that would be enough.  I see an ugly future coming, and I can't stop it, but I can at least tell people to watch out for it.

Thanks for your very thoughtful and informed post, Vaske--you have helped to expand my perspective.  And btw, I did not read the thread linked, so my bad for making comments that may have been out of turn given the situation!  Anyway--I much appreciate your words on this topic, thanks.
 

[mylilmonkeys]

Originally Posted by MsBlack 

Originally Posted by mylilmonkeys 

As an apprentice, I have done the heel stick a number of times.  We preferred to let the baby cry, as the increased heart pumping helps the blood to flow faster.  It is really difficult, sometimes, to get all the blood needed to fill the sample card, and they will send the card back and insist on a retest if there is the slightest spot not covered, or if it takes too long to fill the sample, allowing areas to dry before it is filled.  No one likes to retest just because the first test was refused for one of these problems.  

It sounds to me like you have been using a far less effective method of blood collection than you could be.  Let me suggest the following, so you can prevent a lot of baby distress and have an easier time with the collection yourself:

1. Use a neatnik or tenderfoot lancet--these are small blades, not pin-hole type.  The blade mades a shallow slice instead of a tiny hole--a slightly larger wound that bleeds more initially.  The babies clot pretty quickly nonetheless once you're done.  These blade-lancets cost only a few dollars and are well worth it all around!

2.  Warm the baby's foot/lower leg thoroughly before using the blade-lancet.  A heating pad is a great tool for this--just fold the heating pad around the baby's leg for several minutes while mom holds baby comfortably.  A warm leg will make the blood flow more freely, no need whatsoever to cause the baby more distress just to get the blood pumping well.

3.  Mom should hold the baby upright against her shoulder (like when burping a baby, facing mom's shoulder).  This way you will also have gravity's help with sufficient blood flow--and baby will be in mom's arms in a comfortable position, also reducing baby's distress from the small pain of the lancet.

4. Have your stuff all ready, so that the instant you make the cut, you are ready to catch blood.

Since using this method, very few babies cry--and those that do, cry very little and generally are settled before the blood is done being collected.  Even those that cry a bit all through, do not cry nearly as hard, and are soon settled the second you stop messing with their leg.  All that is needed is several drops of blood--this can collected within 30-60 seconds, depending on how freely the baby bleeds.  It is only rarely necessary to gently milk downward on baby's calf to promote a little more flow; only rarely necessary to use an alcohol wipe over the cut to interfere with clotting and thus promote a little more flow.

For the parents: insist that your provider use a blade lancet, not a point.  You can buy one with your birth supplies if you are having a homebirth.  Hold your baby during the process, make sure your baby's leg is nice and warm.  If your providers don't already do the things suggested above, then tell them this info first so they understand what you want---those who are unaware of this method may be quite pleasantly surprised to learn something new that prevents baby's distress during the collection.

Having once used the point-type heel stick--and not warming, the leg either--I can tell you, some babies cried so hard!  I hated that I was distressing them and of course babies and parents weren't too happy either.  Much nicer for everyone to use a method that causes less pain, requires less prodding/milking of the foot to get the blood.  The point-type stickers are great when you only need a drop or 3 of blood....but the blade lancets, used on a warmed leg, are by far superior when you need more like 12-15 drops for the collection card.

ETA:  The test is best done at about 3-4 days pp, when the milk is in or starting to come in.  Earlier testing may not be conclusive and will just need to be done again.  It is done at 24-48hrs in the hospital MAINLY because that is when they have you/baby on hand--and the possibility of false positives is why they may want the test repeated a 2nd time later.  Also--if for any reason the screening is not done by 3-5 days pp, then it's best to wait until 2wks, IMO.  That is mainly because baby's clotting factors have reached their peak at 8days; it can be much harder to get a good blood flow at/around that time.  If you wait til 2wks, then clotting factors have backed off a bit and testing is easier.  Of course, if baby seems symptomatic (of anything, really) then it's best to get med eval ASAP, no matter what the baby's age.
 

I am no longer apprenticing since my family circumstances have made it impossible, but I believe it was the tenderfoot that we used, and we followed the same protocol as you.  It's also important to wait until you have a really nice, big drop hanging from the heel before blotting it.  Some babies bleed easily, some less so.  It's definitely not the "fun" part of midwifery!

[MsBlack]

Huh...interesting.  I guess there must be something different about the way you and me do this test, because now that I follow the above protocol, I would neither say that blood collection is difficult, nor that it was necessary for the baby to cry.  In fact most of the babies give a little yelp when initially cut, then settle down entirely.  Makes me curious!

[robiinmarie]

Ok, here's my two cents as a mom with a pku baby(he'll be two next month). We are really glad we had the test done despite initially being apprehensive about it. The disorder is incurable, the effects irreversible. It was really, really hard at the beginning and my heart was bruised and battered but things are leveling out and he's mostly a normal toddler. We've got a few neurological effects that are being looked after but he's ahead developmentally. If we had opted out, we did have the option, he would be seriously debilitated by now. I had the opportunity to meet a few moms who opted out and now have very seriously retarded and physically challenged toddlers who will wear diapers for the rest of their lives. It's a really hard road having a kid with pku (at least this is our experience, in this state, but that is for a different thread altogether) but knowing before the damage is done is so much better for everyone in the family.

[lava mama]

Originally Posted by MsBlack 

Originally Posted by mylilmonkeys 

As an apprentice, I have done the heel stick a number of times.  We preferred to let the baby cry, as the increased heart pumping helps the blood to flow faster.  It is really difficult, sometimes, to get all the blood needed to fill the sample card, and they will send the card back and insist on a retest if there is the slightest spot not covered, or if it takes too long to fill the sample, allowing areas to dry before it is filled.  No one likes to retest just because the first test was refused for one of these problems.  

It sounds to me like you have been using a far less effective method of blood collection than you could be.  Let me suggest the following, so you can prevent a lot of baby distress and have an easier time with the collection yourself:

1. Use a neatnik or tenderfoot lancet--these are small blades, not pin-hole type.  The blade mades a shallow slice instead of a tiny hole--a slightly larger wound that bleeds more initially.  The babies clot pretty quickly nonetheless once you're done.  These blade-lancets cost only a few dollars and are well worth it all around!

2.  Warm the baby's foot/lower leg thoroughly before using the blade-lancet.  A heating pad is a great tool for this--just fold the heating pad around the baby's leg for several minutes while mom holds baby comfortably.  A warm leg will make the blood flow more freely, no need whatsoever to cause the baby more distress just to get the blood pumping well.

3.  Mom should hold the baby upright against her shoulder (like when burping a baby, facing mom's shoulder).  This way you will also have gravity's help with sufficient blood flow--and baby will be in mom's arms in a comfortable position, also reducing baby's distress from the small pain of the lancet.

4. Have your stuff all ready, so that the instant you make the cut, you are ready to catch blood.

Since using this method, very few babies cry--and those that do, cry very little and generally are settled before the blood is done being collected.  Even those that cry a bit all through, do not cry nearly as hard, and are soon settled the second you stop messing with their leg.  All that is needed is several drops of blood--this can collected within 30-60 seconds, depending on how freely the baby bleeds.  It is only rarely necessary to gently milk downward on baby's calf to promote a little more flow; only rarely necessary to use an alcohol wipe over the cut to interfere with clotting and thus promote a little more flow.

For the parents: insist that your provider use a blade lancet, not a point.  You can buy one with your birth supplies if you are having a homebirth.  Hold your baby during the process, make sure your baby's leg is nice and warm.  If your providers don't already do the things suggested above, then tell them this info first so they understand what you want---those who are unaware of this method may be quite pleasantly surprised to learn something new that prevents baby's distress during the collection.

Having once used the point-type heel stick--and not warming, the leg either--I can tell you, some babies cried so hard!  I hated that I was distressing them and of course babies and parents weren't too happy either.  Much nicer for everyone to use a method that causes less pain, requires less prodding/milking of the foot to get the blood.  The point-type stickers are great when you only need a drop or 3 of blood....but the blade lancets, used on a warmed leg, are by far superior when you need more like 12-15 drops for the collection card.

ETA:  The test is best done at about 3-4 days pp, when the milk is in or starting to come in.  Earlier testing may not be conclusive and will just need to be done again.  It is done at 24-48hrs in the hospital MAINLY because that is when they have you/baby on hand--and the possibility of false positives is why they may want the test repeated a 2nd time later.  Also--if for any reason the screening is not done by 3-5 days pp, then it's best to wait until 2wks, IMO.  That is mainly because baby's clotting factors have reached their peak at 8days; it can be much harder to get a good blood flow at/around that time.  If you wait til 2wks, then clotting factors have backed off a bit and testing is easier.  Of course, if baby seems symptomatic (of anything, really) then it's best to get med eval ASAP, no matter what the baby's age.
 

This is how my midwife perforned the PKU test on my DD, and it was SOOOOOOOO much better than how the hospital lab did it a few days after DS was born. DD gave a teensy yelp when the blade struck her foot, but there was no crying whatsoever. I'll have the midwife with this baby use the tenderfoot, even if I have to purchase it myself.  
 

[Delicateflower]

---

Originally Posted by Vaske 

I would characterize what the mama and baby on that thread went through as more than "short term discomfort", and in any case, my aim is not to dissuade anyone from screening tests, only to point out the risks of screening so everyone can make an informed decision for themselves.

People are terrible at assessing risk.  I have a book, True Odds, that starts out with the author's wife being offered an amniocentesis to check for Down's Syndrome.  They declined when they realized that the risk of miscarriage from the amnio was greater than the risk of the baby having Down's (and that they would keep the baby, in any case).  They connected these dots entirely on their own; the medical people were of absolutely no help in weighing cost versus benefit.

In my state, there's about a 1 in 800 chance of being diagnosed with anything as a result of newborn screening--not all of these are fatal conditions, and not all would go undetected without screening.  That makes forgoing the screen safer for the baby than homebirth, and also safer than amniocentesis (which is now being widely offered to pregnant women).

False positive rates for screenings in general can run as high as 90%, nine false positives for every true positive.  And false positives have definite costs--people tend to put too much faith in tests, mistake test results for actual reality, and jump into making decisions without seeking confirmation first.  False negatives can happen, too, and give a false sense of security.  (Lowering the false negative rate as much as possible tends to increase the false positive rate, and vice versa.)

There's also a lovely statement from my state health department's web site, encouraging homebirth midwives to put pressure on parents who want to opt out of the screening.  If this was only about health, the health department could choose to remain in *real* dialogue with the public, and they could easily change their policies to address the concerns of parents like me.  Really, if they would just mail the sample card back to us when they finish the test, that would be enough.  I see an ugly future coming, and I can't stop it, but I can at least tell people to watch out for it.

Vaske, your post is an example of how terrible people are at assessing risk. Comparing declining the newborn screening to homebirth in terms of risk is invalid. It's not just the incidence of something, but the outcomes. A 1 in 800 chance of death or brain damage when declining the screening is balanced against no harm if you have the screening. A 1 in 800 chance of death or brain damage as a result of homebirth (if that figure is correct) is balanced against the danger of hospital birth.

Even if you take a case of false positive for galactosemia the pros and cons are not equivalent. The con of a false positive is interruption to breastfeeding, the con of not being screened at all is death. There are very few people who would choose death over formula.

Likewise, a choice between a 1 in 800 chance of death or brain damage or having one's children's DNA being in a big brother file, most people would agreee that 1 in 800 is too high.

Another example might be being positive for a cancer gene. If having the BRCA breast cancer gene gives you a 1 in 500 chance of having cancer the decision to have a mastectomy is different than if you had the (imaginary) POOP gene that gives you a 1 in 500 chance of bowel cancer and you need to make the decision to have a fecal blood test every 12 months. The test with no downside is a no-brainer.

If the screening is declined I don't believe that most peds would look at a baby with these symptoms

Galactosemia, due to a complete lack of Gal-1-PUT activity, presents in the first weeks of life. The most prominent clinical features are liver dysfunction manifest as jaundice and hypoglycemia; neurologic findings of irritability and seizures; and gastrointestinal findings of poor feeding, vomiting, and diarrhea.

and jump to Galactosemia as a diagnosis.

And they might not even have symptoms

There are several clinical variants due to genetic mutations in Gal-1-PUT that alter, but do not eliminate, enzyme activity. The most common of these are the Duarte and Los Angeles variants. Patients with these variants are usually clinically asymptomatic; however the reduced enzyme activity will be detected by newborn screening. Further testing is required.

[georgia]

Hi, I need to ask that we not discuss other threads in this conversation. You are welcome to link for informational purposes, but please do not bring other members' situations, comments or posts into this thread. It's like talking about someone behind her back, and no one appreciates this, even if the intentions are good. Thanks a bunch, and please feel free to PM me, wombatclay or mandib50 with any questions. 

[georgia]

I tested with my babies. Poking a newborn's heel is definitely not my idea of a good time, but I did believe the potential gain of information outweighed the risks of not testing. 

[MotherWhimsey]

I have a child with a metabolic disease that is not detected through the new born screen. But knowing personally how devastating they can be, I have done and will do any new born screening that is offered. Even though the chances of your child having one of the diseases tested is small, it is well worth knowing. If you could alter a child's diet or give them a pill every day and prevent the heartbreak that goes along with some of the problems caused by metabolic disease, it's well worth putting them through a heel stick for. At one point before my son was born I may have been skeptical of why it was necessary, I would have thought it was awful to jab a new baby needlessly, and would have thought that risking loosing breastfeeding for a few weeks was a horrible thing. Now, after many surgeries, tube feeding, countless blood tests, x-rays and scans, the whole question of "is it something we should do" seems so absurd. People talk about their right to decline, their right not to hurt their baby with a tiny little needle, or the fear of what happens with the material sent in, but doesn't the baby have just as much of a right to have a widely offered test that could prevent them from permanent damage?

I have a friend that has 3 children. The first did not get the new born screen and ended up having Galactosemia (sp?). He was breastfed for a few weeks and now has fairly severe permanent delays. His two siblings were tested at birth also have it and avoided the foods that needed to be avoided (including breastmilk) and are both very normal. I know that if my friend could go back and do it over again, she would have gotten the testing so she could have prevented how ill her son was and the permanent damage done in those first weeks.

I think that for me it is easily summed up with something my midwife said to me about homebirth, "there are risks with everything, there are risks to homebirth, that doesn't mean you shouldn't have one but you need to think really hard about whether or not you could handle it if something did go wrong. If you couldn't live with yourself afterward, then homebirth isn't the right option for you." I had a home birth and we did the newborn screening. But I use that philosophy for a lot of things now. So if you were offered the new born screening and turned it down and it turned out your child had damage or even died from one of the diseases that could be prevented, could you live with that guilt? I don't think that I could, so it's not something that I could forgo.