Changes to Newborn Screening Program will Hurt Kids and Community Health

A recent rulilng by the Minnesota State Supreme Court requires the Minnesota Department of Health to destroy all newborn screening blood samples after 71 days. This is a troubling setback for a program that has succeeded at improving public health and saving the lives of children.

The blood samples will no longer be stored for possible analysis if a child or a sibling develops a health issue beyond those 71 days. They will also not be made available for use in important tests about health problems like immune deficiency disorders or public health dangers.

As a geneticist at Children’s Hospitals and Clinics of Minnesota, I have seen firsthand how the newborn screening program saves lives. Our ability to detect rare and life threatening genetic conditions early on allows us to treat children proactively, in many cases saving their lives and allowing them to grow into healthy kids and adults. Storage of these samples is critical so we can go back when needed to these spots and test issues that emerge later in life or conditions involving relatives.

Here are just a few examples of why the availability of previously collected samples is important:

  • Newborn screening spots may detect patients with rare inborn errors of metabolism. The registry allows physicians to use the blood spots to confirm diagnosis. This confirmation prevents delay of necessary care or repeated unnecessary testing.
  • SIDS is the unexpected, sudden death of a child under the age of one. Typically a medical evaluation does not show an explainable cause of death. The newborn dried blood spot is the only available sample left to grieving parents and physicians striving to understand the cause of SIDS. If a second child in the family is diagnosed with a rare disorder, the family may request the blood spot to understand if the baby who passed away had the same disorder. Similarly, some infants with near SIDS present to an emergency room quite ill. If they are transfused with blood, the only way to get a repeat blood specimen that is untainted with anyone else’s blood products emergently is to obtain the newborn screening card.
  • For a child who has failed the hearing test, it is important to know if they were born with an infection called cytomegalovirus (CMV). In most people, children and adults, CMV causes a cold. It is only if the mother had CMV during pregnancy that the infection may cause congenital hearing loss. When a child has recognized hearing loss within the first year of life, the only way to know definitively if there was a congenital CMV infection would be to check the newborn screening card. Otherwise, it’s impossible to know when the infection occurred, in utero vs. later after the baby was born.

I hope that Minnesota can act quickly to save this program, and retain its leadership in the area of health screening and public health research. At the very least, before we continue destroying potentially valuable blood spots, let’s have a clear discussion about the impact of this action.

Once a blood spot is destroyed, we can never recover the information contained in the sample. We owe it to our kids, their parents and our communities to pause, evaluate, and communicate a clear direction forward that will allow health professionals access to blood spots. I trust that an informed discussion will point us to the right decisions and will allow us to maintain and improve upon this extremely valuable program.

 

Nancy Mendelsohn, MD
Medical Director – Genetics Clinic
Children’s Hospitals and Clinics of Minnesota

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