State of Michigan Newborn Screening: What Most Parents Get Wrong About the Heel Prick

You’re exhausted. You just had a baby. The room is dimly lit, and a nurse walks in with a tiny lancet to prick your newborn's heel. It’s one of those "welcome to the world" moments that feels a bit cruel, but honestly, it's probably the most important five minutes of your child's first week. This is the state of Michigan newborn screening, and while most people just call it the "PKU test," that name is about thirty years out of date.

Michigan actually has one of the most robust screening programs in the country. We aren't just checking for one thing. We’re checking for over 50.

Most babies look perfectly healthy at birth. That’s the tricky part. These rare genetic, metabolic, and
endocrine disorders don't show up in a standard physical exam. If you wait for symptoms to appear, it’s often too late to prevent permanent damage. Michigan law requires this screening because catching a condition like SCID (Severe Combined Immunodeficiency) or GAL (Galactosemia) on day two means a child can live a normal life instead of facing severe disability or death.

What’s Actually Being Tested in 2026?

It’s a lot. As of January 2026, the Michigan Department of Health and Human Services (MDHHS) has expanded the panel again. They just added Mucopolysaccharidosis Type II (MPS II), also known as Hunter Syndrome, to the list.

The blood spot panel is the big one. They collect five circles of blood on a special filter paper card. These spots are sent to the state lab in Lansing—the only place in Michigan authorized to run these specific tests. They're looking for:

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• Amino Acid Disorders: Like PKU or Maple Syrup Urine Disease (yes, that’s a real name, and no, it’s not sweet—it’s dangerous).
• Organic Acid Disorders: These affect how the body breaks down proteins.
• Fatty Acid Oxidation Disorders: This is where the body can't turn fat into energy. Think MCAD deficiency.
• Hemoglobin Disorders: Sickle Cell Anemia is the one most people recognize here.
• Lysosomal Storage Disorders: This includes the newly added MPS II and Pompe disease.

But it isn't just the blood. The state of Michigan newborn screening also includes a hearing
test and a "pulse ox" test. The pulse oximetry happens about 24 hours after birth to check for Critical Congenital Heart Disease (CCHD). They put a little sensor on the baby's hand and foot. If the oxygen levels don't match or are too low, it’s a red flag for a heart defect that might otherwise go unnoticed until the baby gets home and starts struggling to breathe.

The Cost Factor

Let’s talk money, because things got a little pricier this year. As of January 1, 2026, the fee for the initial newborn screening card (the blue one) rose to $183.19. If your baby needs a repeat screen—maybe the first one was "unsatisfactory" or the baby was premature—the pink card fee is now $167.00.

Don’t panic about the bill, though. For most families, this is rolled into the hospital's maternity charges and covered by insurance or Medicaid. If you're planning a home birth, you’ve got to buy the kit yourself. If things are tight financially, MDHHS does have a hardship waiver. You can actually call them at 517-335-1400 to see if you qualify for a free kit.

The BioTrust Controversy: Where Does the Blood Go?

This is where things get "kinda" complicated. Once the lab finishes the tests, there’s usually some blood left on that card. Since 2010, Michigan has been asking parents for consent to store these "leftover" spots in the Michigan Neonatal Biobank at Wayne State University.

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They call it the BioTrust for Health.

The idea is that researchers can use these de-identified spots to study why babies get sick or how environment affects health. But not everyone is on board with the state keeping their kid's DNA on ice for 25 years. There’s been a ton of legal back-and-forth—cases like Kanuszewski v. MDHHS have made it all the way to the Sixth Circuit Court of Appeals.

Here is the bottom line: You have a choice.

1. You can say "Yes" and let them use the spots for research.
2. You can say "No" but let them keep the spots for "quality
   improvement" (which helps the lab stay accurate).
3. You can fill out a form to have the spots destroyed entirely after the screening is done.

If you weren't asked or you've changed your mind, you can download a "Directive to Destroy" form from the Michigan.gov website. They’re pretty strict about it now because of the lawsuits.

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Reading the Results (And What if They're "Positive"?)

No news is usually good news. If the screen is negative, the results go to the hospital and your pediatrician. Most parents never even see the report.

However, if a result comes back "abnormal" or "borderline," things move fast. A "positive" result does NOT always mean your baby is sick. Sometimes it's a false positive because the baby didn't eat enough before the test or the sample was taken too early (ideally, it should be between 24 and 36 hours after birth).

If you get a call, the state will likely coordinate with a specialist—like a metabolic doctor at University of Michigan or Children’s Hospital of Michigan. The Children’s Special Health Care Services (CSHCS) program in Michigan is actually a huge help here. They often cover the diagnostic testing even if you have private insurance, regardless of your income.

Common Misconceptions

• "My baby looks fine, so we don't need it." Totally wrong. Most of these kids look like "perfect" newborns until their metabolism crashes a few days or weeks later.
• "It’s just for genetic stuff." Nope. It catches infections and hormone imbalances, too.
• "The hospital handles everything." Usually, yes. But if you move or change doctors right after birth, those results might get lost in the shuffle. You’ve got to make sure your current pediatrician actually has the report.

Actionable Steps for Michigan Parents

1. Check the 24-hour mark: Ensure the hospital doesn't do the heel prick too early. If it’s done before 24 hours, you’ll likely have to come back for a repeat, which means another $167 and another poke for the baby.
2. Verify your doctor's info: Make sure the hospital has the correct name and fax number for your pediatrician. This is the #1 reason results get delayed.
3. Decide on the BioTrust: Read the consent form carefully. If you don't want your child's blood stored for research, check the "No" box. It won't affect the quality of the screening your baby receives.
4. Keep a copy: At your baby’s first "well-child" visit (usually 3-5 days after birth), ask the doctor, "Did you get the newborn screening results back yet?" If they say no, ask them to follow up with the state lab.
5. Watch for signs: Even with a "Pass," if your baby becomes extremely lethargic, won't eat, or turns yellow (jaundice), call the doctor immediately. Screening is great, but it’s not 100% perfect.

The state of Michigan newborn screening is a safety net. It's one of those things you pay for and hope you never actually "use." But for the 250+ Michigan families every year who get a life-saving diagnosis from that tiny heel prick, it’s the most valuable test their child will ever take.

For the latest updates on the 2026 testing panel or to request your child's old records, you can contact the MDHHS Newborn Screening Follow-up Program directly at 866-673-9939.