Programs
Screening & Surveillance
The Screening & Surveillance section is a collaborative public health effort within the Bureau of Family Health that identifies rare or hidden disorders through newborn screening and monitors birth defects in children in Kansas. Newborn screening has been available to all infants in Kansas, at no cost to families, since 1965.
Newborn screening identifies rare or hidden disorders and birth defects in children in Kansas shortly after birth in order to treat these conditions as early as possible. Helpful links and resources about newborn screening testing and results, and frequently asked questions can be found below.
Newborn Screening Results: When You Get Them & What They Mean
Newborn Screening Basics
Blood Spot Screening
What is blood spot screening?
Blood spot screening is the process of testing babies to determine whether they are at risk for 32 rare conditions that may make them sick before symptoms appear. Often, it is the only way to tell if newborns are affected since these conditions are generally not detectable at birth.
Why is blood spot screening important?
Blood spot screening is important because it can save babies’ lives and help them have a healthy start. Identifying and treating affected infants right away is the key to preventing significant health problems and even death. Affected babies may look perfectly normal at birth. Without newborn screening, the disorder may stay hidden but still cause permanent damage to the baby.
When should blood spot screening be performed?
Blood spots are typically collected when your baby is between 24 and 48 hours old. On occasion, the blood spot may need to be collected before 24 hours or after 48 hours. Your baby’s provider will discuss this with you if necessary.
How is blood spot screening performed?
Blood spots are collected by a health care provider trained in the collection process. A small amount of blood is obtained from the baby’s heel. The blood is not collected in a tube but rather is placed on a piece of filter paper (newborn screening card).
The newborn screening card is then sent to the Kansas Health and Environmental Laboratory (KHEL) for testing. Results are usually available within a week after receiving your baby’s newborn screening card. Your baby’s blood spot screening results will be sent to your birth provider, who will forward the results to your baby’s primary care provider. If additional testing is needed, your baby’s results will be communicated directly to your baby’s primary care provider, who will discuss the next steps with you.
What happens during the collection?
A trained medical professional will take a small amount of blood from your baby’s heel. The baby’s heel is warmed (a few minutes) and sterilized. Then the medical professional will use a heel lancet (designed for infants) to make an incision on the baby’s heel and the blood is collected on specially designed filter paper.
Where will the collection be performed?
Most collections occur in the hospital or birthing facility before you go home. Healthcare professionals should inform you that the collection will be taking place, and it could occur while the baby is in your presence or in a separate room, depending on the facility’s policies. Most midwives are trained to conduct a blood spot collection, however, it may be necessary to go to a collection facility to obtain a newborn screening specimen if your baby is born outside of a birthing facility.
Hearing Screening
What is hearing screening?
Newborn hearing screenings are a safe and painless way to determine whether your baby has a significant hearing loss in the range where speech is heard.
Why is hearing screening important?
Access to language is the foundation for your baby’s ability to learn, so it’s important to identify any problems with hearing as soon as possible. Speech and language begin to develop at birth, even though babies don’t usually begin to talk until about one year of age. A child with hearing loss may have difficulty with speech and language if hearing loss is not identified early. Without hearing screening, hearing loss is usually not noticeable to parents or providers until developmental delays have already occurred. Screening and follow-up testing are the only ways to find hearing loss early. Learning if your baby has hearing loss will help you and your baby find the best ways to communicate and avoid delays.
When should hearing screening be performed?
Screening should be performed as soon as possible, and all additional screening should be complete before your baby is one month old. If your baby is born in a hospital, the initial screen should be performed before you and your baby go home. Hearing screening is best performed when your baby is calm, well-fed, and comfortable.
How is hearing screening performed?
Unlike hearing tests for older children and adults, newborn hearing screening does not require active participation from your baby. Instead, a small screening device will play soft sounds while it measures how your baby’s inner ear or hearing nerve responds.
While your baby is calm, your baby’s hearing will be checked using one of two methods: Otoacoustic Emissions (OAE) or Automated Auditory Brainstem Response (AABR). Both of these methods are painless and are acceptable for screening babies. With OAEs, a small rubber tip placed in each ear delivers soft tones and measures the echo that occurs when the ear is functioning normally. With AABRs, earphones deliver the test sounds. Sensors placed on the baby’s head and neck measure the baby’s brain’s response to those sounds. For both OAEs and AABRs, a computer measures whether the result is a PASS or REFER (not pass).
You will be notified of your baby’s hearing screening results by a member of your health care team performing the test. If your baby does not pass the hearing rescreen, further testing is needed to make sure your baby is hearing all the sounds important for speech and language development. Your baby’s provider will help you arrange an appointment for follow-up as soon as possible.
Pulse Oximetry Screening
What is pulse oximetry screening?
Pulse oximetry screening is a fast and painless procedure that measures the amount of oxygen in your baby’s blood. Low oxygen levels can be a sign of critical congenital heart disease (CCHD) or other conditions such as breathing problems or infections.
Why is pulse oximetry screening important?
While prenatal ultrasounds may detect some cases of CCHD, not all can be detected before birth. Without screening shortly after birth, babies with CCHD are sometimes sent home without care because they appear healthy. At home, these babies can develop serious health problems and often require emergency care. If CCHD is detected early, however, infants can be treated and lead healthier lives.
When should pulse oximetry screening be performed?
The pulse oximetry screen is best performed when your baby is at least 24 hours old.
How is pulse oximetry screening performed?
Pulse oximetry screening uses sensors placed on the baby’s skin (typically the hand and foot) to determine the amount of oxygen in the blood. The test is a quick, non-invasive procedure that takes only a few minutes.
You will be notified of your baby’s pulse oximetry result by a member of your health care team performing the test. If your baby does not pass the screen, your baby’s care provider will arrange for further testing and evaluation to determine if your baby has CCHD. Further testing may include a repeat pulse oximetry screen, an echocardiogram (an ultrasound of the heart), an electrocardiogram (tests the electrical activity of the heart), and/or a chest x-ray. If any of the results from the additional testing are of concern for CCHD, then your baby may need to see a pediatric cardiologist. Babies with CCHD need surgery within the first year of life. Each baby with CCHD will require a unique treatment plan developed for his or her particular heart defect.
General Newborn Screening FAQs
Do I need to request screening for my baby?
No. All Kansas-born newborns receive newborn screening unless a parent refuses.
How much does blood spot screening cost?
Blood spot screening is free of charge. Kansas state statutes require that every baby born in Kansas be screened for all metabolic and genetic conditions on the newborn blood spot screening panel at no cost to families.
How are hearing screening costs covered?
Screening is typically included with birth and nursery charges and is covered by health insurance. If you are not planning to deliver in a hospital, talk with your midwife about hearing screening costs.
I am not delivering in the hospital. Can my baby still be screened?
Yes. Midwives have a process for sending blood spot collection samples to the Newborn Screening Program for testing, and many midwives have the ability to screen for critical congenital heart disease. If you are planning an out-of-hospital birth, ask your midwife what newborn screening options they offer.
Does newborn screening vary by state?
All states in the United States have newborn screening programs. However, each state determines which conditions are included in their newborn screening panel. Kansas currently screens for 34 disorders.
I have no family history. Should my baby still be screened?
Yes. Families with no family history and/or parents who have already had healthy children can still have a child affected by one of the conditions on the newborn screening panel. Many babies affected by one of these conditions have no family history.
What if my baby looks healthy?
Many of the conditions Kansas screen for are not visible through a regular examination. With many of these conditions, babies may look normal and appear healthy at birth and even into infancy. Newborn screening identifies infants at risk for one of the conditions on the newborn screening panel, providing the opportunity for early intervention before the condition progresses. Early intervention leads to better outcomes than waiting until babies show that they have one of the screened conditions.
What causes these conditions?
Conditions on the newborn screening panel can be the result of several factors. Some conditions are genetic, while some are not. If hearing loss or another condition is detected in your baby’s screening, your baby may be referred to a genetic counselor for more testing to determine if the cause is related to genetics.
How and when will I get my baby’s results?
Hearing and pulse oximetry screening results are available as soon as the screening is complete. Parents are encouraged to ask their birth provider or person performing the screen about their baby’s results at the time of screening. The blood spot screening process takes a few days, up to a week. Once complete, all results are provided to the hospital or birth provider who collected the screen. If your baby has an abnormal (out-of-range or borderline) result, our follow-up team will contact your baby’s doctor or clinic as soon as possible with next steps. Your baby’s doctor should then contact you to discuss the results and recommendations. In addition to connecting with the provider of record, the Blood Spot follow-up team will send condition specific information and resources to families upon an abnormal or out-of-range result.
What is the Special Health Care Needs program?
The Kansas Special Health Care Needs (SHCN) program provides specialized medical services to infants, children, and youth up to age 21 who have eligible medical conditions. Services may include diagnostic evaluations, treatment services, hearing aid devices or care coordination and must be prior authorized. For more information HERE.
Support After Diagnosis
Resources are available for families through the Kansas Department of Health and Environment and other organizations. Education and support are important for your child’s future learning and social and emotional well-being.