States District of Columbia
What Conditions are Screened For in District of Columbia?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Organic Acid Conditions
- State preferred name: 5-oxoprolinemia
About Newborn Screening in District of Columbia
Since 1980, the mission of the District of Columbia Newborn Screening Program is to detect, diagnose, and treat every newborn baby who tests positive for certain inherited genetic conditions. This program can mean the difference between life and death for a newborn. It can also prevent life-threatening complications and serious chronic consequences such as developmental disability, liver disease, blindness, neurological degeneration, malnutrition, and death. The vision of the Newborn Metabolic Screening Program in the District of Columbia is that all newborns are screened for metabolic conditions prior to hospital discharge. The Program’s purpose is to require all hospitals in the District of Columbia to screen for 40 inherited genetic disorders that are treatable by diet, vitamins and/or medication, or by anticipatory measures to prevent attacks.
Every live born infant shall have an adequate blood test for all conditions defined in the District of Columbia Newborn Screening Requirement Act upon informed consent by the parent. The initial screening is to be done in the hospital and may be repeated, as necessary, prior to discharge. When a live birth occurs in a hospital or birthing center, the physician shall have a specimen collected by filter paper of the infant’s blood prior to the infant’s discharge from the hospital or birthing center. The infant’s blood for these tests shall be collected not earlier than 24 hours after the first feeding following birth and no later than when the infant is one week old. If the infant is born in a hospital or birthing center and is discharged before 48 hours after birth, a blood specimen shall be collected prior to discharge.
In this case, the newborn must be tested again prior to one week of age. The hospital or birthing center should provide written notice of this requirement to the parents, guardian, or other legally responsible person.
How is Newborn Screening Paid for in DC?
The cost for the NBS test is covered and not billed to the family.
Policies and Resources
While highly encouraged, newborn screening is not required. The hospital or birthing center will inform the parent about the purpose of testing and must document in the newborn’s health record that the parent was educated about the test and that the parent gave consent or non-consent to test.
Support for families:
One of the concerns families may have when they find out their child has a condition detected through newborn screening is the increase in health care costs. Fortunately, DC has various programs to help.
The Children with Special Health Needs (CSHCN) Newborn Metabolic Screening Program notifies the infant’s parent(s) and the newborn’s physician about abnormal findings, and assists in securing appropriate follow-up testing and treatment when indicated. CSHCN refers critical infants to specialists within the District of Columbia that offer evaluation, treatment and counseling services. Specialty centers for endocrinology, hematology, and medical genetics are located throughout the District of Columbia. Also, the District will partially pay for treatment on a sliding scale if an infant’s parents are indigent.
Storage and Use of Dried Blood Spots:
Bloodspot screens are retained for one year in the District of Columbia.