In this Section:
What conditions are screened for in Maryland?
Amino Acid Disorders
- State preferred name: congenital hypothyroidism
Fatty Acid Oxidation Disorders
- State preferred name: multiple acyl-CoA dehydrogenase deficiency
Organic Acid Conditions
About Newborn Screening in Maryland
Newborn screening is a public health program in all 50 states and the District of Columbia. The program helps detect many conditions that babies have at birth but cannot be seen at birth. By detecting these conditions early, treatment can begin and the negative effects of the condition can be decreased. If left untreated, these inborn conditions can lead to various health problems, ranging from mental disabilities to death.
In Maryland, the first Newborn Screen (NBS) should be collected when the baby has had 24 hours of feeding. Ideally, this is the day the baby is discharged from the hospital. The 2nd screen should be collected by a health care provider when a baby is greater than 7 days old, ideally between 10 days and two weeks. A screen collected at less than 24 hours is not valid for several conditions on the NBS screening panel.
Historically, the second screen was initiated because many babies were discharged before 24 hours of age and therefore, did not have a satisfactory initial screen. The 2nd screen is important in these cases so that a baby can have at least one satisfactory screen. Over the years, the two screen system has been supported by the fact that about 10% of congenital hypothyroidism is identified by testing the second (subsequent) screen. The second screen may also pick up milder variants that are not evident at the time of the initial screen. The second screen picks up several children each year with conditions that are not detectable on the initial screen. Beginning in 2006, the state of Maryland began testing for cystic fibrosis (CF) by implementing the IRT/IRT system. Using this system, two elevated IRT levels are needed to determine if a baby is at increased risk for cystic fibrosis. This means that the two screen system is a vital part of CF testing.
Since detecting these conditions soon after birth will greatly increase your child’s chances of living a full, healthy life, it is necessary that your doctor has a current phone number and address so they can reach you if something in your newborn’s screening results appear abnormal. If your doctor contacts you, do not panic. This does not mean that your child definitely has a condition, but it does mean that you need to follow instructions as soon as possible to get your newborn retested and started with treatment if necessary.
How is Newborn Screening Paid for in Maryland?
The cost is $70.00 per child and is the responsibility of the birthing center or person responsible for having the newborn screening carried out, regardless if a newborn is born in a birthing center.
Policies and Resources
A parent or guardian in Maryland may refuse to have their baby participate in newborn screening for any reason. If they choose to refuse testing, the parent or guardian will be required to sign an informed dissent form provided by the hospital.
Support for families:
One of the concerns some families may have when they find out their child has a condition detected during newborn screening may be the increase in health care cost. Fortunately, Maryland has various laws and programs that aim to make specialized care and support for your loved one affordable.
If your child is covered under a Health Maintenance Organization (HMO), the HMO organization must include as part of its benefit package of health care services coverage for medical foods and low protein modified food products for the treatment of inherited metabolic diseases. The foods will be covered as long as they are prescribed as medically necessary for the therapeutic treatment of inherited metabolic diseases and given under the direction of a physician.
If your child is uninsured, the Maryland Children’s Health Program (MCHP) can help. Uninsured children under the age of 19 are eligible for MCHP medical coverage if their family income is no more than 200 percent of the Federal Poverty Level (FPL). In order to be eligible for benefits under this program, a child applicant may not be currently covered by or voluntarily dropped employer-sponsored group health plan or health insurance coverage within six months before the date of application to the Local Health Department or Local Department of Social Services. Pregnant women and their newborns qualify if their family income does not exceed 250 percent of the FPL. There is no asset test for MCHP. MCHP eligible individuals receive the full range of Medicaid covered services and are enrolled in the Maryland Managed Health Care Program, HealthChoice.
Uninsured children younger than 19 whose family income exceeds 200 percent but is no more than 300 percent of the Federal Poverty Level may be eligible for Maryland Children’s Health Program (MCHP) Premium. MCHP Premium beneficiaries are enrolled in the Maryland Managed Health Care Program, HealthChoice, and receive the full range of Medicaid covered services. In order to be eligible for benefits under this program, a child applicant may not be currently covered by or voluntarily dropped employer-sponsored health insurance coverage within six months before the date of application to the Local Health Department or Department of Social Services. In addition, a parent or guardian must pay a monthly family premium. This contribution is per family, not per child. For futher information about state-supported health care options for your family, call the DHMH MCHP Hotline at (800) 456-8900. Here is the application for the MCHP program.
Storage and Use of Dried Blood Spots:
All information obtained through newborn screening is confidential, including the registry of diagnosed cases maintained by the department. The department must keep newborn screening information coded and must treat it as a confidential medical record.
The department may disclose information if the parent or guardian or the individual screened provides informed consent, which must include the scope of the information requested for release and the purpose. Information may also be released to provide services to the newborn as well as to study the relationships of the various factors of conditions that are screened in Maryland. It is also able to be distributed for state or federally mandated statistical reports. Anonymous information is subject to the public records statute.
After the newborn screening process is complete, there will still be a little bit of blood left over on your newborn’s collection card. This is called a “residual dried blood spot”. Consistent with the Code of Maryland Regulations, a residual dried blood spot will be stored for 25 years after newborn screening testing has been completed. During storage, they may only be used for the newborn screening process or for supplemental or diagnostic testing. They will not be used for research unless the research is approved by the Newborn Screening Program as well as an Institutional Review Board. The researcher must return all untested dried blood spots to the laboratory within six months of completing the approved research. The laboratory will also retain all test rules and reports as well as the informational section of the dried blood spot collection care and supporting documents for 25 years.
When attempting to contact the family of a child who may need follow-up through the newborn screening program, the department may contact the parents directly if the primary physician cannot locate them. Also, the department must make the infant's medical record, which includes a record of test results, available to parents on request.
Maryland statutes requires that a carrier of a hereditary disorder not be discriminated against or stigmatized, and it creates a commission to protect the “freedom, health, and well-being of citizens of this state from improper treatment or advice, discrimination, violation of privacy, or undue anxiety that results from any hereditary and congenital disorders program.” The statute clarifies that any recommendations made with regard to discrimination do not deprive an individual of the right to redress for discrimination.