BOISE, Idaho — In an effort to restore legislative oversight to state agencies, Idaho lawmakers have begun to convert long-standing agency rules into code. One such rule from the Idaho Department of Health and Welfare which addressed newborn screenings caught the attention of vigilant parents across the state.
After Governor Brad Little signed Senate Bill 1014 into law on March 12, lawmakers received intense backlash from parents, especially mothers. The parents claimed the mandatory newborn eye drops and screenings for several health conditions violated their parental autonomy and authority to make medical decisions for their children.
In response, the bill sponsor Senator Camille Blaylock (R–Caldwell) drafted Senate Bill 1179 to broaden the allowed exemptions so that parents could “opt-out” of the procedures and screenings for any reason, not just by religious objection.
The exemption language now extends to “religious or other grounds, including philosophical or conscientious beliefs” as well as medical concerns.
During floor debate, Senator Brian Lenney (R–Nampa) addressed the importance of shifting existing rules into code. “This is a good thing that strengthens parental choice [and] health freedom,” he stated before urging colleagues to approve the bill.
Senator Ben Toews (R–Coeur d’Alene) debated in favor stating, “I heard a lot from my constituents that they were very concerned about the lack of exemptions for these procedures for infants… I see this as a great step forward.”
Brandon Shippy (R–New Plymouth), a freshman Senator who voted to advance the bill, noted that lawmakers need to remind themselves that “parents love their children and have their best interests in mind way more than the state of Idaho.”
“This strikes that really good balance of making sure that we, as the state of Idaho, protect parental rights and authority and don’t look at parents as suspect,” stated Shippy. He continued by reminding the legislative body that God has given parents to children to act as their primary protector and caregiver.
The Senate passed SB1179 with a 31-3-1 vote. It now heads to the House, where it is expected to pass without any significant opposition. In only a few weeks, Idaho parents were able to get the attention of lawmakers and move them to act in support of parental rights and authority.
The procedures for newborns that parents will soon have the ability to opt-out of are:
- the pulse oximetry test for critical congenital heart disease (CCHD),
- the ocular antibiotic prophylaxis for the prevention of gonococcal ophthalmia neonatorum, and
- a dried blood sample, usually obtained by pricking the newborn’s heel, to test for five specific medical conditions.
Some parental advocates believe more amendments to SB1014 will be needed. While the non-invasive pulse oximetry test hasn’t provoked any controversy, the mandate that requires the results of the test to be placed on each child’s certificate of birth has raise alarm-bells for those who do not want the results of medical procedures to be included on official documents that are used to verify identity and citizenship.
CCHD is estimated to affect two out of every 1,000 babies born each year in the United States. The pulse oximetry test measures how much oxygen is in the blood and can help to identify babies that may be affected with CCHD within the first days of birth.
Additional concerns have been raised over the lack of destruction policy for the newborn’s biological sample. A destruction policy was part of the agency rule, but no language for destruction exists in the new law.
The newborn’s dried blood sample is sent to a laboratory to screen for:
- Phenylketonuria (PKU) — an inherited disease in which the body cannot metabolize a protein called phenylalanine. An estimated one in every 10,000 to 15,000 babies is born with PKU in the U.S. Without treatment, PKU can cause intellectual disability.
- Congenital hypothyroidism — a condition in which the baby is born with too little thyroid hormone. Approximately one in 2,500 to 3,000 babies per year in the U.S. are born with this condition. Left untreated, low thyroid hormone levels can lead to mental developmental problems and poor growth.
- Galactosemia — an inherited disorder in which the baby is unable to metabolize galactose, a milk sugar. It is estimated to occur in about one baby in every 53,000 births. Without treatment (avoidance of milk), galactosemia can be life threatening. Symptoms may begin in the first two weeks of life.
- Maple syrup urine disease — a rare inherited disorder caused by an inability of the body to properly process certain parts of protein called amino acids. The name comes from the characteristic odor of maple syrup in the baby’s urine caused by the abnormal protein metabolism. It affects about one in every 185,000 babies born worldwide and most often occurs in populations with a small gene pool or when close relatives have children together.
- Biotinidase deficiency — an inherited disorder characterized by a deficiency of the biotinidase enzyme. This enzyme is important in metabolizing biotin, a B vitamin. It affects one in 60,000 to 75,000 babies in the U.S. and the lack of the enzyme can lead to severe acid build up in the blood, organs, and body systems.
