What Conditions are Screened For in Kansas?
Amino Acid Disorders
- State preferred name: congenital hypothyroidism
Fatty Acid Oxidation Disorders
- State preferred name: long chain hydroxy acyl-CoA dehydrogenase deficiency
Organic Acid Conditions
- State preferred name: infant multiple carboxylase deficiency
About Newborn Screening in Kansas
The Kansas newborn screening program (“NBS”) is a collaborative effort between public health, hospitals, providers and the parents of the infants screened. Screening is a public health service which mutually benefits the newborn as well as the public. Since 1965, it has been available to all newborns in Kansas and it is done shortly after birth.
While most newborns look perfectly healthy, there are some conditions that aren't visible. Unless these conditions are identified and treated early, they can cause severe illness, intellectual disability, or in some cases death. To test for these conditions, a baby's heel is pricked about 24 hours after birth and the hospital staff collects a small sample of blood. This blood is then sent to the Kansas State public health laboratory where it is tested for several different conditions. If the test is abnormal, retesting must be done to confirm a diagnosis.
State public health staff is available to notify and assist both providers and parents with next steps after an initial abnormal result. Most infants with abnormal newborn screening results have a normal retesting. This is called a “false positive” and while it is very scary, it is somewhat common. Initial NBS results can be abnormal because the blood was drawn too early, the baby is premature or many other reasons. When the first screening test indicates a condition may be present, a second screening test is necessary to determine whether or not the newborn needs to have further “confirmatory” testing done. If it is confirmed that the child does have a condition, a system of providers is available to assist the family with immediate treatment. Since beginning early treatment of a newborn diagnosed with a condition greatly increases their chances of avoiding the adverse effects of these conditions, it is important that Kansas parents provide an up-to-date phone number and address for your physician to contact you with further instructions. If your physician does contact you, do not delay in following their instructions.
This free Kansas program encompasses all components of a comprehensive state system:
- Screening - About 40,000 KS births/initial tests each year with about 2,000 needing retest.
- Follow-up - Appropriate health care providers are notified and staff track to assure retesting.
- Diagnosis - Newborns with positive screens see medical specialists for a final determination.
- Management - Families and their infants receive ongoing care and monitoring through a medical team.
- Education - Information and education are available to families and to providers.
- Evaluation - Advisory council oversees program/systems to ensure effectiveness/efficiency.
How is Newborn Screening Paid for in Kansas?
Kansas is one of three states in the US that does not charge for newborn screening. The program is funded through the Children’s Initiative Funds and the Title V Block Grant.
Policies and Resources
Kansas parents may opt out of the testing procedurefor religious reasons only. This refusal shall be documented in the child’s record. Future parents should discuss this option with their doctor first so they can be made aware of all the risks to their child associated with opting out of this life-saving test.
Support for families:
Children in Kansas who test positive for a condition will be eligible to receive medical specialist monitoring which will provide the family with consultation and diagnosis assistance along with providing or coordinating ongoing monitoring of the child. Also, some conditions require special diets and if your child has one of those, the health department will provide reimbursements for the costs of the foods for families if funding is available and the family does not have access to any other resource or program. The reimbursement amounts vary based on the family’s income. Families who earn less than 700% of the poverty level will likely receive some percentage of reimbursement for the costs of their child’s specialized nutrition.
In addition, Kansas does provide some financial assistance to families who have a child with a metabolic condition detected through newborn screening through Special Health Care Needs (SHCN), an agency which promotes the functional skills of young persons in Kansas who have or are at risk for a disability or chronic disease. A family’s eligibility for the program is based upon their income level and ability to pay. Eligibility is determined using all income sources (taxable and nontaxable) of all persons living in the same household. The family must apply to the program. Further information about this program as well as the application can be found by visiting the Kansas Department of
Health and Environment website.
Storage and Use of Dried Blood Spots:
After your newborn’s blood is tested for all of the conditions within the newborn screening program in Kansas, a little bit of blood remains on the collection cards. This remaining blood is called a “residual dried blood spot”. While Kansas does not have a statute controlling what is done with the residual dried blood spot as well as your newborn’s information after the testing is completed, the newborn screening program has a Standard Operating Procedure (SOP NS 031.00) which dictates what is to be done with it.
Kansas will retain the residual dried blood spots long enough to insure that all tests were completed and reported accurately. If the residual dried blood spot returned a normal result, they will be kept for one month in a freezer. At the end of one month, the residual dried blood spots are autoclaved, a process by which all components of the blood are destroyed by high pressure and heat. After they are essentially destroyed, they are thrown away in the trash. The residual dried blood spots with abnormal results will be retained longer for personnel competency tests, instrument validation, and possible validation of new tests in the future. They may also be shared with other laboratories to confirm the results or for validation studies or other research. If the residual dried blood spots with abnormal results are shared with another laboratory, they will be de-identified, which means they cannot be tracked back to the individual newborn or linked to that newborn’s information. All that will be shared is a “punch” out of the residual dried blood spot.