Iowa Newborn Screening Program
Our newborn screening program seeks to identify possible disorders present at birth so that intervention can occur as early as possible and complications can be avoided. Navigate the following questions to learn more about the process and team behind our newborn screening program:
What is newborn screening?
Newborn screening is used in Iowa to detect certain inherited conditions by collecting drop of blood from your baby’s heel shortly after birth. Watch this video and visit Baby's First Test to find out more:
How is my baby screened?
Newborn screening is a very quick procedure. A few drops of blood are obtained by pricking the baby’s heel at least 24 hours after birth or just before discharge from the hospital. If born outside of the hospital, the screening can be arranged with their health care provider, local hospital or public health nursing agency, to be done 24 hours to 48 hours after birth. This is then sent to the State Hygienic Laboratory.
How do I receive the results?
Generally you will not be notified of the results unless a rescreen is required. Your health care provider will be the recipient of these results.
A rescreen does not automatically mean that something is wrong. There are a number of reasons that a re-screen may be required, including:
- Something was wrong with the sample
- Sample was drawn too early
- A blood transfusion was received before the sample was collected
- There was an abnormal test result indicating there may be a disorder
It is important that rescreen is done immediately, as many of these disorders can cause damage in a short period of time.
What is the cost of the screening?
Iowa law sets newborn screening at $122 and includes expenses for the equipment, laboratory staff and supplies, a courier service that delivers the samples to the laboratory and professional follow up. This fee is usually part of your hospital bill and covered by your insurance company. There is no charge for a rescreen sample if it is necessary.
How do I get more information?
We are dedicated to guiding you through the screening process. We encourage you to start conversations with us and your health care provider if you have questions or need clarification along the way. We can be contacted through our online form or directly through one of our staff members.
There are also a number of helpful websites and materials that provide further information about screening:
In Iowa, the following disorders are required to be screened for by law:
- Congenital adrenal hyperplasia
- Congenital hypothyroidism
- Cystic fibrosis
- Expanded Panel Disorders
When the specimen is sent to the State Hygienic Laboratory at the University of Iowa, the sample is tested for a large variety of disorders. When a possible disorder has been detected, we alert the baby’s health care provider to the need for further testing or special care. By intervening early, complications from these disorders can be prevented.
Storage and Use of Leftover Screening Specimens
In the screening process, there may be some of the dried blood spot. Learn more below about the protocols in place in handling the remaining sample.
How is newborn dried blood spot (DBS) screening done?
A sample of blood, usually gathered through a heel stick, from the baby is placed on a special filter paper that is transported to the State Hygienic Laboratory at The University of Iowa. They test the spot for over 50 disorders that could cause serious health problems, such as illness, physical or mental disability or even death if left untreated.
Is all of the dried blood spot used?
A very small amount of sample is left after the screening tests are done. Iowa law allows these to be stored for a period of five years in a locked, secure facility at the SHL lab in Ankeny, Iowa. After this time the blood spots are destroyed. All identifying information is protected by being stored separately and given a unique identification number.
Why does Iowa store the residual DBS specimens?
The leftover dried blood spot is used for several different purposes. The babies’ names and dates of birth are kept confidential.
First, they are used to monitor the quality of testing and accuracy of results, a common practice in most laboratories. The same test done a month apart should yield the same result.
Second, they are used to make sure that improved testing methods are running properly.
Third, they can be used for the benefit of your child and family later on. A child’s sample may be accessed if other health problems develop, the results need to be repeated, a missing or deceased child needs to be identified or investigated or parents request risk information for future pregnancies.
Finally, dried blood samples are used to investigate public health issues through research initiatives focused on things like childhood cancer, type I diabetes, lead poisoning, cytomegalovirus infection, HIV/AIDS and other disorders affecting children.
Are the specimens used for research?
Research is an important part of learning about causes and treatment for various genetic disorders. In order to protect your baby’s privacy and make sure that best research practices are followed, a number of guidelines have been put in place in allowing the dried blood spots to be used by researchers. The research must investigate a new concept, remove identifying details about the baby, be approved by the institutional review board, our advisory committee, and the Iowa Department of Public Health.
What about my baby’s DNA?
The SHL does not routinely conduct DNA analysis on newborn screening specimens. DNA is the hereditary material found in humans that can be found in all parts of the body, including blood, hair, skin and saliva. It may be done as needed to identify a particular genetic mutation in order to create a plan of care for the baby. The recommendation for DNA analysis is given to the baby’s primary care provider. DNA within the blood samples does not breach confidentiality of the owner, as another sample must be provided for comparison to make identification.
What information is available to prospective parents?
It is required by Iowa law that birthing providers provide information to parents about the newborn screening program. To learn more about the screening procedure, conditions included in the screening panel and information about the use and storage of residual specimens, consult “One Simple Screening Could Save Your Baby’s Life.”
Learn more about public health laboratories by watching the video below:
Refusal of Newborn Screening
If you are not comfortable with your baby being screened, it is possible to refuse screening. If you decide to refuse, you must inform your health care provider and accept the legal responsibility for the consequences of your decision. Your health care provider will notify the newborn screening program that you have refused the screen. We encourage you to take some time to learn about the program and have a conversation with your health care provider before making a decision. Health care providers must document parent’s refusal in the medical record, and notify us of your decision.
Newborn Screening for Critical Congenital Heart Disease
Heart defects are detected at birth in 9 of every 1,000 live births, with 25 percent of these babies with critical defects. A critical defect requires surgery or another intervention at some point in the first year of life. Heart defects can vary widely, including problems with the rhythm of the heart beat and structural abnormalities. Early detection and timely intervention is important to getting the best outcomes for patients.
A number of different organizations, including the American Academy of Pediatrics (AAP), the American Heart Association (AHA), the U.S. Health and Human Services Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) and the American College of Cardiology are continuously working to establish best practices in detecting and treating these disorders. See the groups’ strategies in their report here.
Currently, the suggested method of detecting these abnormalities is pulse oximetry, which measures the amount of circulating oxygen in the baby’s body. Low levels of oxygen may signal a heart defect. It is important to remember that pulse oximetry cannot detect all cases of CCHD. You and your primary provider will have a conversation about what the test results mean when your baby is tested for heart defects at birth.
Consult these resources to learn more about heart defects present at birth:
Special Medical Formula and Food Program
Individuals with genetic amino acid and organic acids disorders need to eat a special diet with limited protein. The Iowa Newborn Screening Program identifies individuals to receive assistance in accommodating lifestyle changes associated with these disorders. The University of Iowa provides the service. If you may be eligible for the program, contact Carol Johnson at the University of Iowa, Department of Pediatrics, at either (319) 356-2674 or (866) 890-5965.
Other resources for you:
Iowa's Collaborative Improvement and Innovation Network (CoIIN) Project to Improve Timeliness in Newborn Screening
The Iowa Newborn Screening Program (INSP) is working with its newborn screening partners to improve the timeliness of newborn screening. Iowa already has the best rate in the nation for the time it takes to collect the blood spot specimen from the newborn to the time the INSP reports out the results of the screening testing. We want to do better.
Why is this important?
The sooner a baby can be identified as potentially having an inherited condition through the newborn screening, the sooner they can receive care to address the condition and ensure the baby has the best life it can.
Some of the conditions we screen for are considered "time critical" conditions. These are inherited conditions that if not detected and treated quickly, could cause major harm or even death for the baby. Every hour counts when dealing with time critical conditions.
The INSP has a set a goal to have at least 95% of newborn blood spot specimens received by the State Hygienic Laboratory for testing within 60 hours from the birth of the baby.
This is a lofty target, but several Iowa hospitals are already meeting this goal. The Iowa CoIIN project will be providing infographic reports to all hospitals that care for newborns that describe their status toward meeting this goal. Click here for a sample of an infographic report. This report also shows how the hospital is doing compared to the state average, and how it compares to other birthing hospitals.
Stay tuned for more information about this exciting project.