Government, Parents and Birth: Who is in Charge?

MSNBC.com ran a recent article about certain states mandating certain procedures for infants, regardless of parental consent. While the exact situation doesn't apply to most of us, it does raise some very important questions about the role of government, who is the primary provider for children, and the cost of liberty. Two quotes really stuck out in the article to us. The first is from a hospital defending the laws that require blood tests of newborns, even if parents object:

“Some parents may not comprehend the risks they are taking with their children’s health,” said Bruce Rieker of the Nebraska Hospital Association.

The second quote is from one of the parents who challenged the law in court:

Louise Spiering said: “There was a very steep cost in terms of the intrusion on our private lives.”

These sort of stories hit home not only because we have children and believe Yahweh has put them under our care (not Big Brother's), but also because we have heard well intended people speak passionately about the necessity that everyone receive certain medical treatments regardless of the person's individual will. For example we have read material from people who passionately believe every pre-teen girl should receive the HPV vaccine regardless of lifestyle and parental consent. I could write quite a bit on this topic, but I will let others comment for now :)

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Newborn blood testing

Submitted by Tammy on Mon, 2007-01-29 16:19.

Oy, don't get me started on this, Joshua!

"They asked for seven days to complete the testing to avoid any unforeseen problems, although they would have preferred to skip the test altogether."

I read back when we were expecting Eliyahu that the PKU test results can be inaccurate unless the baby's been getting breastmilk, so it's best NOT to have the test done immediately. Here's a summary article that basically says that testing within 48-hours is just a precaution in the off-chance that it might actually be accurate. Apparently false-positives at that point are common.

So from the MSBNC article you posted, Joshua, I just don't understand how waiting 7 days for the PKU test would so surely harm the child. So it really doesn't make sense to me that a state has a law (that cannot be opted-out) about testing within 48 hours.

I mean, even if I believed it was okay for the government to infringe on our personal rights, that law just isn't crucial, in my opinion.

"The validity of performing mandatory PKU tests 48 hours after birth has been questioned because of the high false negative rate. A second test is usually performed at a two-week checkup. In babies testing positive for PKU, at least one more test should be performed to confirm results." (From a LLL page)

Why not do a little more educating, so parents can recognize symptoms for possible illness? Our last midwife said that generally you would be able to see symptoms before you ever got confirmation from the pKU test.

For the record, I'm not necessarily against a diagnostic blood test. You do need to be sure that the "problem" is properly diagnosed before you begin treatment though.

Ugh- this is a sore subject!

Submitted by Andrea1548 on Sat, 2007-09-15 21:19.

Honestly - why do these poor little newborns, who just had to go through the trauma of being born, have to be subjected to MORE? Yikes!

We declined the Hepatitis B vaccine at the hospital when Liam was born - the doctor looked at me like I was bonkers. "But surely, you'll have him vaccinated?" My response was "yes, when he enters an environment that could put him at risk, and not before." For us, that environment is kindergarten. I just don't understand why we, as a society, are over-vaccinated our kids. I had chicken pox, and I survived - now they have a shot to help prevent it... yeesh.

I don't understand the PKU testing too much - I just know that it was done as the heel stick when Liam was born, and we haven't heard anything since, and it is mandatory in WI. If PKU didn't cause such potential health issues, and it wasn't mandatory, I'd have denied it.

I think the key is finding a healthcare provider - family doc, pediatrician, Ob/GYN, etc that is open, honest, and straightforward with you. Our doctors have been wonderful, but then again, WI does have some of the highest scores in healthcare in the nation - I suppose I'd feel differently if i was in a state that didn't have a high score.

Property of the State

Submitted by Anonymous on Thu, 2007-09-13 20:38.

I find it incredibly upsetting how the government seems to be adopting this idea that they own our children and have the right to dictate how to parent. Here in Maryland it is getting really bad. A friend of mine has been being harrassed by Child Protective Services for the past four months because she had an unassisted home birth and didn't take the child to the hospital immediately afterwards. Keep in mind, the baby is perfectly healthy and doing well. When asked why she was being picked on the social worker said, "Because when you do things out of the ordinary, questions will be asked." It's pretty scary that a government agency can butt into our lives just because we decide to think a bit outside of the box.

What's worse is there are so many people encouraging this turn of events! People that I think truly believe they are fighting for the greater good...but they don't realize how they are working to destroy the rights of individuals everywhere. I am due to give birth any day now and am having an unassisted home birth because my state makes it impossible for any medical professionals to attend home births. I believe that God is in control of such a sacred event, but I am gripped with this fear of being persecuted because I dared to be a little different...because what I feel is safest for my child and I is not what mainstream medicine would prescribe. My husbnad and I plan on going to the hospital right afterwards to avoid major problems but I also know the second we set foot in those doors it will be a whole other battle to insure our child is treated the way we want him to be. :-(

Deleted

Submitted by Jules on Sat, 2007-09-15 20:28.

Deleted to keep my comment to myself. :-)

PKU Testing=Newborn Screening

Submitted by Anonymous on Thu, 2008-04-10 10:43.

I am a parent interested in educating people about newborn screening, which is commonly called PKU Testing. I've been looking at different websites that mention PKU Testing and I felt moved to respond on yours. For the record, we are a Christian family. We have 5 children, 3 by birth and 2 by adoption. We have homeschooled for forever and I am all about keeping the government out of our home. At the same time, I strongly believe in newborn screening and believe it should be mandatory or at least "opt out" until people are much more educated.
The fact that is still called PKU testing (and by health care professionals)is proof that people don't know as much about it as they should. Newborn screening tests for a whole bunch of different conditions. The reason the test has certain guidleines for when it's performed and those don't line up with the PKU guidelines is that some of the other disorders it tests for fall outside the PKU guidelines.
You might have guessed that one of my children has one of the rare conditions that newborn screening tests for.
My daughter appears perfectly normal. She's actually pretty robust, however she is missing or has a defective enzyme that metabolizes medium chain fatty acids (MCAD). As a result, she can't store up energy in her cells for times of fasting. If we didn't know about this disorder, our daughter could get something as "harmless" as an ear infection. As her body tries to heal itself, it requires more energy and at the same time, her appetite decreases. At that point, she could begin having seizures or fall into a coma.
Many parents of children with this disorder have put a mildly sick child to bed and found them dead the next morning. Until that point, the child appeared perfectly healthy.
Knowing about the disorder has made it possible for us to do the simple things we need to do to keep our daughter from being severly disabled or killed by this disorder. We feed her every four hours during the day. At night, she gets cornstarch in her milk and that enables her to sleep for eight hours without being fed. We watch for signs of illness, and are prepared to take her to the emergency room if she ever refuses to eat. There, they would give her a simple Dextros 10 IV and that would give her body the energy it needs while it heals from the illness.
Newborn screening tests for MCAD and a number of other disorders like it. They are all rare and many of them you never hear of. Many are passed on in an autosomal recessive manner, meaning both parents have one normal gene and one mutated gene. Since the parents only carry the mustated gene, they aren't affected by the disorder. The chances that they would meet, marry and have an affected baby with another carrier are slim but I know 350 families that have had it happen, and that is just for one area of disorders that newborn screening tests for.
Please, educate yourself on all the disorders that Newborn Screening tests for in your state. If you still decide to skip it, that is your right but please don't make the decision without being fully informed!