January is National Birth Defects Prevention Month. About one in every 33 babies is born with a birth defect. Not all birth defects can be prevented but women can take steps to increase the chance of having a baby with the best health possible.
After a baby is born, hospitals perform a variety of screenings for the baby. Some tests are completed by a physical exam or through the use of a medical device at the hospital but many genetic disorders can only be detected with a blood sample. In an attempt to help minimize the effects of some genetic disorders, in 1965 New York began the Newborn Screening Program. Since then, millions of babies have been tested and thousands have been identified and treated for their disease.
According to state law, hospitals that deliver babies are required to take the infant’s blood sample within one to two days of the baby’s birth and submit the sample to the New York State Department of Health. There, lab technicians screen the sample for more than 40 disorders including sickle cell anemia, HIV and cystic fibrosis. Though none of these disorders is curable, proper diagnosis and treatment can help people lead longer and healthier lives.
Medicines or special diets can prevent a disorder from impacting the infant’s health for the rest of his or her life. All infants are screened for phenylketonuria (PKU) — a rare condition in which the body is unable to break down an amino acid known as phenylalanine. This can cause problems with the central nervous system and cause brain damage. However, if the disorder is detected, the infant can be treated with a low-protein diet and special medical foods so the effects of the disorder are greatly minimized. When New York’s screening program began in 1965, doctors only screened for PKU.
Since that time, the screenings have been greatly expanded. In 2013, New York passed Aidan’s Law to ensure that the state screened for adrenoleukodystrophy — a rare brain disorder that can be treated with a bone marrow transplant if properly diagnosed.
The law was named for Aidan Jack Seeger, a 7-year- old boy from Brooklyn whose parents pushed for the inclusion of this screening after Aidan’s death in 2012. With a bone marrow transplant, the family and his doctors say his life could have been saved.
At the hospital, parents of newborn children are provided with a brochure that explains the Newborn Screening Program. Information obtained through the sample is returned to the patient’s pediatrician.
A portion of the specimen is also stripped of all information that might identify the infant and may be used in public health research. The sample is also used to track instances of the disorders across New York state.
Parents have the right to deny the screening due to religious objections. To learn more about the Newborn Screening Program, visit wadsworth.org/programs/newborn/screening.
To learn more about birth defects, visit cdc.gov/ncbddd/birthdefects/index.html.
If you have any questions or comments on this or any other state issue, or if you would like to be added to my mailing list or receive my newsletter, please contact my office.
My office can be reached by mail at 200 N. Second St., Fulton, New York 13069, by email at [email protected] or by calling (315) 598-5185. You may also friend me, Assemblyman Barclay, on Facebook.
