Colorado currently screens for 43 conditions. Each state runs its program differently, for more detailed information please visit their website at https://www.colorado.gov/cdphe/newbornscreening.
The state of Colorado does not have a brochure available. You can find more state specific information at their website.
For Health Professionals
What Conditions are Screened For in Colorado?
Amino Acid Disorders
- State preferred name: congenital hypothyroidism
Fatty Acid Oxidation Disorders
- State preferred name: carnitine palmitoyltransferase deficiency- type IA
- State preferred name: carnitine palmyitoyl transferase II deficiency
Organic Acid Conditions
About Newborn Screening in Colorado
The Colorado Department of Public Health and Environment wants to help your baby get a healthy start. Shortly after your baby is born, your baby’s blood will be tested to detect rare but serious health disorders. Newborn babies who have these disorders look healthy, but babies with some of these disorders will get very sick or die just a few days or weeks after they are born. Complications differ based on the particular disorder, but if untreated, these disorders may cause lifelong illness, reduced life expectancy, brain damage, physical and intellectual disability, and some babies will die. The newborn screening test helps find babies with these disorders early, so they can get medical treatment before they get sick. There are no cures for these disorders, but if these disorders are found and these babies get treatment early, the serious problems caused by these disorders can be prevented or reduced. If babies with these disorders get early and continuous treatment, most can grow and develop normally and live healthy lives.
To perform newborn screening a few drops of blood are taken from your baby’s heel and put on a special paper. The state public health laboratory does the testing. Insurance or Medicaid pays for the testing, or parents can self-pay if they do not have insurance or Medicaid.
The state public health laboratory will give the test results to the hospital or your baby’s doctor. Your baby’s doctor will tell you the results of your baby’s newborn screening test. It takes about two weeks for your doctor to get the results. Many healthy babies have newborn screening results that are not normal. An abnormal newborn screening test does not mean your baby has a disease. If your baby’s newborn screening test result is not normal, it means your baby needs more testing to see if your baby does have a disease. Your doctor will tell you how to get the additional testing that your baby needs. Your baby might need to see a specialist. Get any additional testing your baby needs right away!
Your baby will be tested two times. Your newborn baby must be tested before going home from the hospital. If newborn babies have to stay in the hospital for a while after they are born, they must get their newborn screen before they are two days (48 hours) old. All babies get a second newborn screening test when they are one to two weeks old, even if the results of the first test were normal. The second newborn screening test is for your baby’s safety. It can find a disorder that was missed on the first screen.
As parents of a newborn baby, there are many things you can do to make sure your baby gets this important testing. Before your baby goes home from the hospital, check with hospital staff to make sure your baby got a newborn screening test. When your baby is one to two weeks old, your baby should see a doctor for a “well-child check-up.” Ask the doctor for the results of your baby’s first newborn screening test. In most cases, the results of your baby’s newborn screening test will be normal. If your doctor tells you that your baby’s newborn screening test was not normal, your baby will need more testing. Follow your doctor’s instructions carefully and be sure to get the tests your baby needs right away. Because all babies need a second newborn screening test, be sure the doctor tells you how to get that second test, and do it right away.
A baby’s first newborn screening test is usually sent to the lab with the mother’s last name. If your baby might be known by more than one last name, include both names on the second test, so the lab will know that both tests are for the same baby. Be sure your doctor has correct contact information for you.
Check back with the doctor for the results of your baby’s second newborn screening test.
Hospital staff and your baby’s doctor can answer questions you have about newborn screening.
How is Newborn Screening Paid for in Colorado?
The cost of the screening is $92.00, which covers the first and second screen. The fee is subject to change and is typically covered by insurance and Medicaid.
Policies and Resources
Parents have the right to refuse screening if it conflicts with their religious or personal beliefs.
Support for families:
Health Care Program for Children with Special Needs (HCP)
Families often need help understanding what services are available to assist them. The Health Care Program for Children with Special Needs (HCP) is a resource for families, health care providers, and communities. The program’s goal is to help improve the health and well being of Colorado’s children with special health care needs and their families. There are 17 HCP regional offices located throughout the state linking families with providers, services and supports within their local communities. For more information, call 303-692-2370, or visit the HCP website.
The Family Healthline 1-800-688-7777
The Family Healthline is a statewide telephone information and referral service (English and Spanish) that provides callers with the eligibility criteria and resources for Colorado health care programs that provide services to pregnant women, children and individuals. Resources include indigent medical care, vision, dental, mental health care programs and nutrition programs. Information is also available about services for emergency shelters, domestic violence counseling, victim assistance programs, legal aid, housing assistance, abstinence education, family planning and other services as needed.
Metabolic Formulas and Foods
Children diagnosed with some of the diseases that we screen for will require certain “special metabolic formulas and foods” as part of their treatment.
If your child has private insurance, Colorado’s laws require insurance companies to cover medical formulas and foods for certain conditions found through newborn screening. Your insurance plan must have prescription coverage and deductibles and co-pays may apply.
Customer Service (English and Spanish) (303) 866-3513); email: firstname.lastname@example.org
Contact Colorado Medicaid for information on coverage of metabolic formulas and foods.
Child Health Plan Plus (CHP+)
Child Health Plan Plus (CHP+) is low-cost public health insurance for Colorado's uninsured children and pregnant women who earn too much to qualify for Medicaid, but cannot afford private health insurance.
Contact CHP+ for information on coverage of metabolic formulas and foods.
Customer Service: (800) 359-1991; (Colorado Medical Assistance Programs - follow the prompts to reach CHP+) http://www.cchp.org
WIC (Women, Infants, and Children) Nutrition Program
WIC provides supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five. WIC covers some metabolic formulas. To find your local Colorado WIC provider, call The Family Healthline (English and Spanish) at 1-800-688-7777.
Storage and Use of Dried Blood Spots:
After the newborn screening is completed, there will remain some dried blood on the screening test cards. These are called “residual dried blood spots.” The residual dried blood spots are stored at the lab for 6 months for the purpose of retesting the newborn if necessary. Genetic information linked to the individual is considered the property of the individual and it will never be released without the patient or the patient’s guardian’s consent. During storage, information from the newborn screening process may be given to a research facility as long as the researcher does not get any information that identifies who the information belongs to. This means that a researcher will only have access to anonymous samples. Release of any identifiable information will require written consent from the baby’s parent or guardian. Your newborn’s identifying information will never be used for anything other than therapeutic purposes and will never be used to deny group disability or long-term care insurance or any other nontherapeutic purpose. However, the genetic information obtained during newborn screening may be released to be used for a criminal investigation or prosecution. Following the six-month storage period, the blood spots are separated from the infant's identifying information and the spots become unusable through a process called autoclaving and the information section is shredded.
During the six months that the infant’s blood spot card is stored, parents may request their infant's newborn screening card to be released to them by submitting a letter to the laboratory requesting it. Parents may then pick up their infant's newborn screening card from the lab by showing valid identification at the time of the release. If parents want to store their child’s residual dried blood spot for a longer period of time for any reason, they may request to have it returned and then pay for it to be stored at a private laboratory.