What Conditions are Screened For in Idaho?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
2-Methyl-3-Hydroxybutyric Acidemia (2M3HBA)
3-Methylglutaconic Aciduria (3MGA)
Glutaric Acidemia, Type I (GA-1)
Isovaleric Acidemia (IVA)
Malonic Acidemia (MAL)
Methylmalonic Acidemia with Homocystinuria (Cbl C, D, F)
Propionic Acidemia (PROP)
About Newborn Screening in Idaho
The Idaho Legislature has instructed the Department of Health and Welfare to require that all babies born in Idaho receive screening tests for conditions that can result in intellectual disability or other serious health problems if they are not detected and treated soon after birth. This procedure is called the "newborn screen," or the "newborn blood spot screen." By detecting these metabolic, endocrine and hemoglobin conditions as well as cystic fibrosis, life-saving treatment can begin immediately.
Until the early 1990s, routine screening of newborns for inherited metabolic disorders was limited to three to five disorders. Today, using technology known as tandem mass spectrometry, more than 40 disorders of body chemistry can be detected in a single analysis of a small blood sample collected on special paper during the first few days of life.
This test is so important because it provides important information about your baby’s health that you or even your doctor might not otherwise know. Most infants with conditions screened by this program show no obvious signs of disease immediately after birth. In each of these disorders there is an "invisible" problem in one of the many chemicals produced naturally in the baby’s body. The Newborn Screening Program uses special laboratory tests to identify the infant who may have one of the disorders so that the baby’s doctor can be alerted to the need for special care for the infant. Hopefully, this can be done before the condition has had time to cause damage. Early diagnoses and medical treatment usually can prevent complications such as intellectual disability or even death from these serious conditions.
Samples for testing must be collected before discharge from the hospital or birthing facility. A tiny sample of blood is obtained by pricking the baby's heel. The sample is placed on a special absorbent paper and is sent to the laboratory. Testing is done at the Oregon Public Health Laboratory. For infants born "out of hospital," the person responsible for registering the birth of the child also is responsible for assuring that a proper specimen is collected and submitted no later than 48 hours after birth.
Parents or guardians of babies need to be aware that a second test will be given and a filter paper test kit for that purpose will be provided when leaving the hospital or birthing facility. The second sample should be taken when your baby is more than 10 but less than 14 days of age. It can be taken at your doctor’s office or at some hospitals and certain laboratories and health departments. After collection, the sample should be allowed to air dry and then mailed immediately in the envelope provided.
Your doctor or clinic will be informed when the tests are completed. Parents are notified only if there is a problem. If the doctor asks you to bring in your baby for retesting, do it as soon as possible! If your child does have a disorder, prompt action is very important. If you do not have a telephone, be sure to give your doctor the phone number of a friend, relative, or neighbor who can contact you. Also, be sure to notify your doctor immediately if you move after your baby is born. If your child should need to be retested, your doctor needs to know where to reach you. Remember, time is of great importance.
When you take your baby to the doctor for a regular checkup, ask the doctor about your newborn’s results. It is important to remember that these tests simply provide information only about some uncommon conditions. An infant free of these disorders may have other medical problems for which these methods do not test. It is very important for your baby to have regular checkups and good general medical care.
Although Idaho does not have legislation requiring hearing screening, approximately 95% of all babies born in Idaho, and 99.3% of all babies born in Idaho hospitals, receive newborn hearing screening. Most midwives in Idaho are now able to provide hearing screenings, and free hearing screenings are available in every region for infants not born in a hospital. You can contact the Idaho Early Hearing Detection and Intervention program coordinator for assistance in locating a center.
How is Newborn Screening Paid for in Idaho?
As of July 2011, the cost of the two-specimen and NICU screening kit to medical providers is $100 total; $51 for the initial screen and $49 for the repeat screen. Cost coverage of this item will be determined by your insurance carrier or funding source.
Policies and Resources
While it is highly discouraged, parents in Idaho have the right to refuse the screening tests for their newborn infant if the testing conflicts with your religious beliefs. Please discuss this decision with your healthcare provider. If you decide to decline the screening, you will be asked to sign an "Informed Dissent" document that releases your healthcare provider from liability for whatever happens to your child due to lack of newborn screening.
Support for families:
One of the most common questions a family will face when told their child has a condition identified through newborn screening is wondering how they will afford specialized care for their newborn throughout life. Idaho has various agencies and laws, which will help provide the best, most specialized care for families in need.
In some circumstances, your doctor or other health care provider may be able to give you all the information you need. Other circumstances require services of a more highly trained professional. Genetic services, including genetic counseling, are available to Idaho residents with genetic or inherited diseases and their families. These services help families and their health care providers make informed decisions about their health care. Once a diagnosis is made, the next step is for a family to understand what the diagnosis means on a practical level. The geneticist or genetic counselor will explain how this condition has affected other people with the same diagnosis. Then they will use this information to help predict what kinds of symptoms or problems you or a family member may face in the future. Recent medical advances have created effective treatments for many genetic diseases. Some conditions have excellent treatment. Others have treatment that is experimental or controversial. At the end of a genetic evaluation, you should have a clear understanding of the available treatments for the genetic condition affecting your family. An appointment for genetic services in Idaho can be obtained at the St. Luke’s Regional medical Center Genetics/Metabolic Clinic.
In addition to support from various state health agencies, Idaho residents covered by Medicaid will have their child’s medical foods provided to them free of charge as long as they are medically necessary due to the condition preventing the use of traditional foods alone. The Children’s Special Health Program Through the Title V Federal Grant provides some access to other foods and specialty care.
Storage and Use of Dried Blood Spots:
Your child’s residual dried blood spot, which is what remains after the newborn screening tests are complete, may be stored at the laboratory for up to eighteen months. Without your written permission, the newborn screening specimen collected from your baby will never be used for anything other than retesting, diagnosis or quality assurance.