Neb. parents believe more than blood lost in newborn screening, fight for religious exemption
(AP) Ray and Louise Spiering wanted to observe a period of silence after their daughter Melynda’s birth, but what they got was an uproar.
To the Spierings, Nebraska’s requirement that newborn babies undergo blood screening within 48 hours of birth is an infringement on their religious beliefs and their right to decide what’s best for their four children.
The couple attend a fundamental Christian church and follow some teachings of the Church of Scientology. Louise Spiering said they wanted “that balance of our beliefs included into the births of our children.”
It’s taken them and another set of parents to the Nebraska Supreme Court and the Legislature in a drive to make the newborn screening law more flexible.
The mandatory test, in which a few drops of blood are drawn from a baby’s heel, screens for dozens of rare congenital diseases, some of which can cause severe mental retardation or death if left undetected.
Nebraska is one of four states _ along with South Dakota, Michigan and Montana _ that don’t let parents opt out of the testing.
The Spierings wanted to avoid loud noises after Melynda’s birth, and also reduce the pain she experienced in order to protect her physical and mental health. The concept comes from the Church of Scientology _ minimizing talking around someone who is in pain, said the Rev. Brian Fesler of Minneapolis, a regional representative for the church.
The church teaches that words spoken during moments of pain and unconsciousness affect physical and mental health later in life, he said. The church encourages silent birth, in which those attending avoid talking.
But the church doesn’t discourage parents from having their children tested, Fesler said.
The Spierings, who apply some tenets of Scientology to their faith, took the silent birth concept a step further. They believe newborns are in pain for at least 3 1/2 days, and don’t want blood drawn _ which they believe would cause more pain _ for at least that long.
They asked for seven days to complete the testing to avoid any unforeseen problems, although they would have preferred to skip the test altogether.
The state insisted, and in September a federal judge upheld the law as constitutional. The judge, however, granted the Spierings an eight-day waiting period while the case was pending, so their daughter was not tested within 48 hours.
Along with the Spierings, Mary and Josue Anaya of Omaha are also fighting the test, in their case because they believe the Bible instructs against deliberately drawing blood. According to the book of Leviticus, “the life of the flesh is in the blood,” and ignoring that directive may shorten a person’s life, they said.
Children’s blood is “something precious in my sight and in the sight of God and not to be tampered with lightly,” said Mary Anaya, who gave birth to the youngest of her nine children in Iowa to avoid the test.
In 2003, the Nebraska Supreme Court ruled against the Anayas. They turned to state Sen. John Synowiecki of Omaha to introduce a measure for a religious exemption.
Armed with a petition including about 100 signatures, Mary Anaya and Louise Spiering testified Thursday before the Legislature’s Health and Human Services committee.
Health officials testified that the requirement is one of the state’s most cost-effective public health programs.
“Some parents may not comprehend the risks they are taking with their children’s health,” said Bruce Rieker of the Nebraska Hospital Association.
Many of the diseases covered in the bill are deficiencies, and one, phenylketonuria, can result in severe mental retardation without diet restrictions starting at birth.
One in every 837 babies born last year tested positive for one of the 34 diseases the state tests for, said Julie Miller, manager of Nebraska’s Newborn Screening Program. But the incidence is much lower for the eight most serious diseases, with one in 112,000 having biotinidase deficiency, which can cause developmental delays.
The Spierings say changing the law will give parents better options, whatever their opposition to the tests.
“We just want to lay the groundwork so that other parents have better choices than we did,” Ray Spiering said. “We weren’t so much against the test. We just wanted a short delay. In a sense, we kind of won” when the judge granted the eight-day delay.
But, Louise Spiering said: “There was a very steep cost in terms of the intrusion on our private lives.”