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Family 2-Part Kit

Family Brochure

Disorders

Clinics for
Specific Disorders

Birth Defect Network

Hearing Screening

Medical Home

Destroying the
Blood Spot

Objection to Newborn Screening (Religious)

Frequently Asked Questions

Frequently Asked Questions

Why does my baby need to be screened?
Utah screens for over 36 inherited diseases that can cause problems for the baby if not recognized and treated early. Babies with these diseases can appear normal at birth, and there may be no sign that the baby is sick until there is irreparable harm, such as brain damage.
How many screens does Utah do?

Utah requires two newborn screening specimens. The first should be collected between 48 hours and five days of age, or right before discharge from the hospital.

The second screen should be done between 7 and 28 days of age, usually at the two week well-child check. However, it may be done up to one year of age if, for some reason, it was missed during the optimal time period.

What do I do if I forgot/lost the second screen card?

The doctor's office has a supply of miscellaneous forms, which are supplied without cost as replacement forms for inadequate specimens, for recall specimens, or for use when the original kit form has been lost.

Make sure the doctor's office writes the original Kit ID Number in place of the miscellaneous number in all three places on the form. This original kit number was issued by the hospital of birth and can usually be obtained by calling hospital nursery.

My baby was born at home, what do we do?
If the newborn is born outside of an institution, the practitioner or other person primarily responsible for providing assistance to the mother at the birth (midwife/doula) must arrange for the collection and submission of an appropriate specimen. If there is no other person in attendance of the birth, then you as the parent or legal guardian must arrange for the collection and submission of an appropriate specimen. If you were not given a first or second newborn screening card, the doctor's office can use a miscellaneous form. The Kit ID number on this form will become the baby's ID number.
What if my baby was not born in Utah?
Follow the protocol for the state in which the baby was born. Each state's newborn screening laws and rules are different. We will do a courtesy screen if requested by the Medical Home.
My baby was adopted; what information should be on the cards?
Adoption issues may cause some confusion. The Newborn Screening Program maintains patient and record confidentiality. The first screen form must be completed with enough information to identify the baby and health care provider. If there is concern about entering the birth mother's information, the adoptive agency or adoptive mother's information may be entered. A contact person must be entered. The second screen form and education should be given to the adoptive agent or adoptive parents with instructions for collection and submission of the second screen specimen. The hospital should not fill out the information on the second screen card. The card should be completed at the health care provider's office with the adoptive names entered.
My baby has casts on both feet; how can we do the second screen?
If the baby has casts on both feet and the baby did not have any abnormal tests on his/her first screen, obtain second screen when/if casts are changed or when the casts are removed. We can screen babies up to a year of age. If the baby had abnormal test results please contact the Newborn Screening Program to determine plan of care.
What if I don't want to have a newborn screen done?
A parent or legal guardian may refuse to allow the required testing for religious reasons only. However, the majority of religions recognize the importance of these screens, and consider them safe and effective in preventing many manageable disorders. If a parent or legal guardian chooses to refuse this testing, it must be on the basis that they are members of a well-recognized religion that teaches these tests should not be done. In such cases the medical home/practitioner or institution will file in the newborn's record documentation of refusal, reason, education of family about the disorders, and signed waiver by both parents or legal guardian. The practitioner or institution needs to submit a copy of the refusal to:

Utah Department of Health
Family Health Services
Newborn Screening Program
P.O. Box 144710
Salt Lake City, UT 84114-4710.