Nebraska: Court Upholds Law Requiring Infant Blood Test (fundie parents)

http://www.kotv.com/main/home/storiesNL.asp?whichpage=1&id=80267

The Nebraska Supreme Court upheld a state law Friday that requires mandatory blood testing of newborn babies, rejecting an appeal by a couple who said it violates their religious beliefs.

Josue and Mary Anaya brought the case after being ordered by a judge in December 2003 to submit their newborn, Rosa, to the metabolic test. The Anayas, who are fundamental Christians, said the test infringed on their rights and could shorten the life of their baby.

``There is no evidence that the state had an anti-religious purpose in enforcing the law,'' Wright said. ``Early diagnosis allows for prevention of death and disability in children.''

Douglas County District Judge Patricia Lamberty noted that the U.S. Constitution gives parents the authority to make decisions concerning the care, custody and control of their children without unwarranted state intrusion. She said, however, that states can intervene if they have a compelling governmental interest, in this case, preventing diseases.

I wish the government would stay out of people's private lives.

I'll probably catch hell for this one, but it's my opinion.

these days.

tragedy, siding with the parents in this case displays a consistent philosophy. I agree completely. If government intrusion into these personal/ family choices is wrong----then it IS wrong, regardless of who is involved.

New borns are also likely to have a TSH drawn. As with phenylketonuria, hypothyroidism may lead to retardation and can be discovered with a "few drops of blood". I allowed everyone of my children to be tested and have sought out and accepted medical care readily ... I do not believe that the government has the right to make those choices for us,though. I am no fan of right wing fundamentalists... but will we then force the parents to accept medical treatment despite religious prohibitions against it? (I understand phenylketonuria is controlled by diet, but what about other conditions?)

Please believe me I would try everything in my power to convince these parents. Also, please be aware that I have been thwarted trying to provide care to fundamentalist patients. I am NOT happy about these refusals but in the end I believe they have that right.

While the Repugs will stand at attention to protect the life of the fetus and the brain dead...I will stand to protect the lives of the most fragile...the newborn.

http://www.medhelp.org/lib/pku.htm

Infants with PKU appear normal at birth. Many have blue
eyes and fairer hair and skin than other family members.
Currently, most symptoms of untreated PKU are avoided by
newborn screening, early identification, and management.

>>>snip
About 50% of untreated infants have early symptoms, such as
vomiting, irritability, an eczema-like rash, and a mousy
odor to the urine. Some may also have subtle signs of
nervous system function problems, such as increased muscle tone, and more active muscle tendon reflexes. Later, severe
brain problems occur, such as mental retardation and
seizures. Other commonly noted features in untreated
children include: microcephaly (small head), prominent
cheek and upper jaw bones with widely spaced teeth, poor
development of tooth enamel, and decreased body growth.

Newborn screening allows early identification and
early implementation of treatment.

Taking a few drops of blood out of a defenseless, helpless human beings heel to diagnose a devastating disease, IMHO, is not the government interfering in someone's life, it is protecting that infant from being ravaged from an easily treated condition--but is only easily treated if it is caught.

not mandate.

Yes, early testing for PKU is relatively unobtrusive, is beneficial in reducing the impact of PKU on the child who inherits it, and assuming it is done properly and the test does not return a false negative.

The test can also return in false positives, requiring the parents of some children without PKU to spend a fortune on special diets which can actually be harmful to children who do not have PKU.

There are other options for early diagnosis. Both parents must carry one gene for PKU, in order to pass it on to their children. The parents can be tested and if at least one parent is clean, there is NO chance their child will have PKU. If the parents are both carriers, the chance is 1/4. Particularly if there is a family history - which there might be if the parents are carriers, or if the parents plan to have several children, this might be a better preliminary step. Parents might also choose to have the test done at some time less intrusive (and more reliable) than the first few hours of their life together as a family - and as currently mandated it generally must be done before the child is released from the hospital. Most false readings occur during the time period before the child leaves the hospital because the test is not incredibly reliable during the first few hours of life.

The government should educate, as part of prenatal education and, particularly if there was none for whatever reason, before release from the hospital. The test should be available free of charge so cost is not a barrier, but not mandated for parents who choose not to have it done (or who choose to have it done on a different schedule - say at the first well baby visit which is more reliable and early enough to catch the problem before damage is done).

My child was tested for PKU, and I did not have any particular objection to that particular test - but it was a slippery slope for the government to move fairly quickly to mandate many other tests/vaccines/preventative treatments for illnesses which do not have such devastating effects - and which tests/vaccines/preventative treatments often have more costly side effects.

There are increasing numbers of vaccines that are mandated - at least three mandatory pre-school vaccines have been added since my daughter got left pre-school (thank goodness before the suggested vaccines became mandatory).

One of the vaccines for a relatively non-life threatening illness that she was required to have (MMR) was almost certainly was the catalyst for a chronic immune system based disease she developed shortly after receiving the vaccine. One form of her illness has been definitively linked to the vaccine, although we have not had the tests done to refine her illness to that particular form. Her cancer risk from IBD at 14 is the same as that of her 52 year old mom, and this summer she begins what will be an annual ritual - a screening colonoscopy for cancer.

Parents need information, and access (without fee) to whatever tests, preventative treatments, and vaccines the government believes are in the best interest of the bulk of the children of the state. Since there it is a continuum, not a black and white line, between things like tests for PKU (very devastating and few side effects) and vaccines like the recently mandated HiB (a virtually non-existent risk for children not in day care which vaccine can have serious side effects), the government should not try to draw one.

Had I had the choice, I would have at least delayed my daughter's MMR vaccine - perhaps a more mature immune system would have handled it better, perhaps non-combo vaccines would have been available that are better tolerated or more isolation done as to what the particular catalyst was, or perhaps I would have decided that the risks of having the vaccine were greater than the risks of the illnesses - particularly for a child who was not exposed to other children on a daily basis at the age at which she was having the vaccine. Bottom line, it should have been our choice - we are the ones currently dealing with the consequences of the government mandate.

Educate, make the tests/vaccines/preventative treatment available without charge, but the choice must be ultimately up to the parents.

by fundy parents without sacrificing any of their beliefs if they know what they're dealing with. The test invloves a heel stick, not a large blood sample but only 5 drops onto blotter type paper.

All healthcare involves risk versus benefit. In this case the risk is minimal (extremely rare infection where the skin is broken, easily cured by bacitracin and a bandaid)and the benefit, a normal lifespan and normal intelligence for their child.

Yes, there are fundy parents out there who risk their childrens' lives by substituting prayer for medical care. The courts have intervened when they've been alerted that these people are risking their childrens' lives, as the state has a stake in giving the next generation its best shot at becoming productive citizens. While I don't advocate forcing any adult to accept any sort of care, children are a different matter, and when their parents' religion crosses the line into either neglect or abuse, someone needs to intervene.

Personal life is only private when it IS personal life, and doesn't extend to someone else's life without their permission, and children by their very nature are incapable of giving such permission.

...immunizations too then. :eyes:

which is a inherited metabolic disorder that, if undetected, will cause profound mental retardation. The damage is easily avoided by dietary changes. Granted it's rare, but devastating when present and untreated.

what test but I would guess it is the PKU test that is done in every state and several other countries. Here is a little about it. Personally I think it is important.

"Because of the very positive outcome when children are treated early and well, newborn screening for PKU is carried out in every state in the US and in many other countries. Such screening started in the mid-1960's. Although PKU affects only one out of every approximately 10,000 babies born in the US, there are several hundred babies diagnosed and put on the diet each year. Children with the severe form of PKU once were destined to become mentally retarded and spend their lives in institutions. Children with the disease are now growing up normally. They are attending college and becoming productive adults as doctors, lawyers, teachers and engineers because of early diagnosis and strict adherence to the diet."

From this site http://www.pkunews.org/

If you love your child, you'll allow the newborn screening tests.

In a nutshell...what tests are done depend in which state the family lives. Some are trying to get it to where all states test for everything. Kind of would suck to have to deal w/ after the fact "gee, if we lived in the state next to ours the baby would have had that test and wouldn't be in this condition".
IMHO, the parents should not be allowed to condemn a child to a possible life of retardation, chronic illness, or death. Same thing happens when a family doesn't believe in getting blood, the hospital/docs then can get a court order to give the blood <at least around here> to the hospitalized child.

Here is an article I Googled:

http://www.ydr.com/story/health/60821/


Federal group seeks expanded tests; most hospitals in state already do so

One federal advisory group plans to recommend all newborns in the United States be screened for 29 rare medical conditions, according to published reports. Some people have questioned the purpose of such tests, while one area doctor believes newborn testing and care could be improved upon.

Parents of children who go undiagnosed with these rare conditions wouldn’t know they should follow special guidelines because their child reacts differently to illnesses than other kids, Vanim said, adding that is why newborn screening is so important. Sue Sager, 45, of Marietta, said the family didn’t know daughter Emily had MCADD. Emily died when she was 6 months old in 1993.


When a report from the federal advisory on expanding metabolic screening is made public, parents will see vast differences between states, said Sharon Terry, president and CEO of Genetic Alliance.“I think they are going to be shocked it isn’t uniform across the United States. . . . There are times when you can cross a state line and go from 30 tests to four tests,” Terry said.

I agree this test is vital for all newborns. We had no objection to our child getting that test when he was born for some genetic information we wanted confirmation yes or no.

What bothers me about these parents in this case...had they not gotten the test and their kid developed some life-threatening disorder, say PKU, then what are the chances they will bring out the lawyers to say their child developed an undiagnosed illness that could have been prevented by..., you get the picture?