One thing we also do with each baby is screen for genetic disorders that would otherwise go undetected.
This testing is called newborn screening. It’s performed on each baby before discharge, with a nurse taking a blood sample from the baby’s heel and then testing the sample for disorders.
Each year in Michigan, about 1 in 400 to 500 births—or about 250 babies—tests positive for a genetic disorder, according to state records. Over the years, about 6,000 Michigan babies have been diagnosed and treated because of newborn screening.
Michigan law requires these tests. Even though the number of babies born with genetic disorders is quite small, the testing allows parents to learn their child’s status and treat them immediately if need be.
Newborn screening used to be known as the PKU test, so-named in the 1960s after Dr. Robert Guthrie developed a test to detect phenylketonuria, or PKU.
Depending on the state, up to 60 different disorders are now tested.
In Michigan, for example, each baby is tested for more than 50 disorders.
The Michigan BioTrust form is the testing card that new parents are asked to read and sign. The state began using this consent form in 2010 to give parents a choice in how their child’s data can be used.
A newborn screening card has six small spots, each one filled with a blood sample. As it’s now designed, mandatory testing doesn’t use all six spots, which means some remaining spots can be used for medical research.
With the new BioTrust form, parents can choose how the remaining dried blood spots will be used.
If they choose “Yes,” the bloodspot can be used for research. If they choose “No,” the leftover spots cannot be used for research purposes.
According to the Michigan Department of Health and Human Services: “Dried blood spots are used to improve current newborn screening tests and to develop new screening tests for other conditions. They can also be used for medical and public health research to better understand underlying causes of disease and possible interventions to improve health outcomes.”
I’ve had some people ask if the blood spots are retained with the name of the baby or the family on them. No, they are not. They are labeled with a code, but the name, address and any other information are not listed along with it.
So, the extra spots on file cannot be traced to your baby.
The Michigan BioTrust for Health also provides a chart detailing how the dried blood spots are used.
Statistically, we see that it’s rare to have any one of the tests come back positive. If the screening does come back positive, however, you will be contacted by your baby’s pediatrician or another health care provider.
This is another reason we need pregnant moms to think ahead about who their baby’s provider will be, as this information is needed for the newborn screening card.