Programs
Overview
Prenatal
The newborn screening system relies on health care professionals and educators to inform parents about newborn screening and its benefits. Parent awareness about the newborn screening process is important for alleviating anxiety about positive, borderline, or unsatisfactory newborn screening results. We have developed a variety of material to help guide these discussions with parents.
K.A.R. 28-4-512 requires birth hospitals and health care professionals to inform parents about the benefits and risks of newborn screening, and the specific benefits and risks associated with choosing to opt-out of any part of newborn screening. The law also requires health care professionals to document in the infant’s medical record that the parents received information about newborn screening and had an opportunity to ask questions.
Postpartum
The newborn screening system relies on health care professionals and educators to inform parents about newborn screening and its benefits. Parent awareness about the newborn screening process is important for alleviating anxiety about positive, borderline, or unsatisfactory newborn screening results. We have developed a Parent Conversation Talking Points to help guide these discussions with parents.
Kansas administrative regulation 28-4-512 requires health care professionals to inform the parents or guardians about the newborn screen prior to collection of the blood spot specimen.
Health Care Professionals’ Responsibilities & Resources
Prenatal
We recommend the following to meet the legal requirements:
Provide the Guide to Kansas Family Supports brochure to parents. This resource was developed by the Kansas NBS program to introduce families to newborn screening in addition to other supports and services available to families during this period of pregnancy. At the time of screening the family should be provided the Newborn Screening pamphlet which includes specific information on conditions screened for on the newborn screening panel. If your facility needs either of the resources above, please contact Shane Morris.
Postpartum
- Provide and review the Newborn Screening Brochure with parents. Visit our resource page for many other resources for birthing facilities, midwives, and physicians.
- Allow parents the opportunity to ask questions. Kansas state statute 65-182 and regulation 28-4-511 allow parents to refuse screening for religious reasons. Have the Parental Refusal Form available for parents who opt out of the screening process.
- Document in the newborn’s medical record that the parents were given this information and that they had the opportunity to ask questions.
What Expectant Parents Need to Know
When a baby is 24-48 hours old, the birth facility will take a few drops of blood from the baby’s heel and send it to the Kansas Department of Health & Environment (KDHE) to screen for 32 treatable disorders. These conditions cannot be detected without specialized tests. But if they are not detected within a few days after birth, they can cause permanent disability, learning delays, and even death.
If a baby has an out of range newborn screen, the baby’s primary care provider (PCP) will need to arrange for further testing, which may include diagnostics through a specialist.
Parents can obtain their baby’s newborns screening results from their baby’s PCP.
Blood spot results are kept indefinitely, but any remaining blood is destroyed after 30 days. Kansas does not sell the remaining blood and we do not use it for research purposes.
When a baby is at least 12 hours old, the birth facility will arrange for an infant hearing screening. A child with hearing loss – even a mild loss – may have difficulty with speech and language development. Hearing loss cannot be easily detected by parents or health care professionals without hearing screening and follow-up testing.
When a baby is at least a day old, the birth facility will arrange a screening for critical congenital heart disease (CCHD). Babies with CCHD can appear healthy at birth but are at risk for serious, life-threatening complications. If CCHD is detected early, treatments are often available that can help affected newborns lead longer, healthier lives.
Per statute 65-182 and regulation 28-4-511, parents can refuse newborn screening for religious reasons. When parents refuse screening due to religious reasons, have the parents sign a refusal form and submit that to the Kansas Newborn Screening Program so that they may follow up with the family.
Advocating for Newborn Screening
If a parent/guardian has reservations about the newborn screen, it is important to review the following points:
- Newborns screened through the newborn screening program may present healthy at birth and have no family history of a disorder.
- Some conditions on the newborn screening panel can cause developmental delays or in some cases, death, if not identified early.
- Hearing loss is often not identified until 1 or 2 years of age without newborn screening and when significant loss of development has already occurred. About 9 out of every 10 babies with hearing loss have hearing parents.
- If a parent refuses screening, the parent must sign a refusal form, which is documented in the baby’s medical record and sent to the Kansas Newborn Screening program.
- Notify parents who arrange private laboratory screening that their results may be delayed, and follow-up may differ from that of the Kansas Newborn Screening Program. The conditions screened for by private laboratories may vary from those that the Kansas Department of Health and Environment screens for. Screening by a private laboratory should be arranged in advance.