WAHOO - Ray and Louise Spiering wanted to observe a period of silence after their daughter Melynda's birth.
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 Spierings, who attend a fundamental Christian church and also follow some teachings of the Church of Scientology, wanted “that balance of our beliefs included into the births of our children,” Louise Spiering said.
The mandatory newborn screening 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 just four states - South Dakota, Michigan and Montana are the others - that doesn't let parents reject the testing.
The Spierings, who are supporting legislation that would let parents decline the tests for religious reasons, wanted to observe a period of silence after their daughter Melynda's pending birth. They wanted to avoid loud noises and reduce the pain she experienced in order to protect her mental health.
They asked for seven days to delay the test, although they would have preferred to skip it altogether.
The state insisted on the tests, and the matter ended up in court
In September 2006, a federal judge ruled against the Spierings, saying the Nebraska law was constitutional. The judge, however, did grant them an eight-day waiting period while the case was pending, so their daughter was not tested within the state-mandated 48 hours.
The Spierings are not alone in opposing Nebraska's law.
Mary Anaya and her husband, Josue, believe the Bible instructs against deliberately drawing blood.
And because, according to the book of Leviticus, “the life of the flesh is in the blood,” ignoring that directive may shorten a person's life.
The children's blood is “something precious in my sight and in the sight of God and not to be tampered with lightly,” Mary Anaya said.
“I'm not asking for anyone to not screen their child,” she said. “I'm asking for the right to decide not to screen mine.”
In 2003, the Nebraska Supreme Court said the law “does not unlawfully burden the Anayas' right to freely exercise their religion, nor does it unlawfully burden their parental rights.”
After losing their legal battle, the Anayas asked state Sen. John Synowiecki of Omaha to introduce a measure that would give parents the option of a religious exemption.
The Anayas and the Spierings plan to attend a public hearing on the bill (LB250) in front of the Legislature's Health and Human Services committee on Thursday.
Mary Anaya said she'll bring a petition with signatures of others who agree that parents should be able to opt out.
Nebraska needs to fall in line with other states on the issue, Synowiecki said.
“I want to give deference to parents,” he said. “We are in the minority of states that does not give an exemption.”
Julie Miller, manager of Nebraska's Newborn Screening Program, argues that 1 in every 837 babies born last year tested positive for one of the 34 diseases the state tests for.
However, for the eight most serious diseases, the incidence is much lower: from 1 in 3,700 for cystic fibrosis, down to 1 in 112,000 for biotinidase deficiency, which can cause developmental delays and other problems.
Health officials say that if the diseases are found early, they often are easily treated.
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.
“The damage does start occurring right away,” Miller said. “By the time symptoms show up, the damage will be done.”
But some families say the screening is not only unnecessary for them, it may be dangerous to both their physical and spiritual well-being.
“Although many in the medical community would have you to believe that not participating in blood screening is highly dangerous, I adamantly disagree,” says Mary Anaya, who said none of her nine children has been screened. “The diseases that are screened for are rare, genetic diseases, not the more common, communicable diseases.”
Ray Spiering said: “These tests are for rare anomalies, so I considered the decision to delay a trivial thing.”
Mary Anaya stresses that she isn't a lawbreaker. In October 2005, the couple drove to an Iowa hospital, where Mary gave birth to their son, Justus.
“In Iowa it was such a simple matter,” Mary Anaya said. “In the birth registration packet, a screening waiver was automatically included. We simply filled it out and sent it back.”
The Spierings say that changing the law will give future parents better options.
“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, because we got what we wanted” when the judge granted the eight-day delay.
But, Louise Spiering adds: “There was a very steep cost in terms of the intrusion on our private lives.”