Ohio Newborn Screening: Tests, Panel, and Costs

Every baby born in Ohio goes through newborn screening before leaving the hospital: a heel-stick blood test, a hearing check, and a pulse oximetry reading for heart defects. Together these tests look for 49 rare but serious genetic, endocrine, metabolic, hearing, and heart conditions that are easier to treat when caught in the first days of life. The program is run by the Ohio Department of Health, and each year it flags roughly 300 babies who need further evaluation for something that might otherwise go undetected until symptoms cause lasting harm.

The Three Tests Your Baby Receives

The Heel Stick (Blood Spot)

A nurse pricks the baby’s heel and collects a few drops of blood on a special card. Ohio guidelines call for the sample to be taken between 24 and 48 hours after birth, no later than five days, and before the baby leaves the hospital. For out-of-hospital births, any medical professional present must collect the specimen within five days; if no professional attended, the local health commissioner arranges collection within five business days of learning about the birth.¹ Babies who have had a blood transfusion or been placed on ECMO follow special protocols with pre-procedure samples and additional follow-up draws.

The card is sent to the ODH Public Health Laboratory and tested for the dozens of conditions on the panel. Results are usually ready within two weeks.

Hearing Screening

Hospitals must perform a physiological hearing screen on each ear before discharge. If the baby does not pass, the screen is repeated on both ears before going home. Babies who have spent time in a level II, III, or IV nursery are screened using auditory brainstem response equipment rather than the simpler otoacoustic emissions test.²

If a baby still does not pass, the hospital must refer the family to an audiologist and help schedule the diagnostic appointment before discharge. Infants who did not pass or were not screened must be reported to the primary care provider within 48 hours and to the ODH director within 72 hours.² When congenital cytomegalovirus is suspected in a baby who fails the hearing screen, saliva or urine testing must be completed within the first 21 days of life.³

The Heart Screen (Pulse Oximetry)

Before discharge and no sooner than 24 hours of age, every newborn is screened for critical congenital heart disease. A pulse oximeter measures oxygen saturation at the baby’s right hand and either foot. A reading of 95 percent or higher in both locations, with no more than a 3-percentage-point gap, is a pass. A reading below 90 percent in either site is an immediate fail, and the baby is referred for pediatric or cardiology evaluation and an echocardiogram. Readings between 90 and 94 percent, or with a gap greater than 3 points, lead to a rescreen in about an hour; if a third attempt still falls in that range, the baby is referred for an echocardiogram.⁴

What Ohio Screens For

The panel covers 49 conditions, according to the federal Health Resources and Services Administration’s state profile.⁵ They fall into several groups.

Amino acid disorders: Phenylketonuria (PKU), maple syrup urine disease, homocystinuria, citrullinemia (types I and II), argininosuccinic acidemia, argininemia, hypermethioninemia, and tyrosinemia (types I, II, and III).
Organic acid disorders: Glutaric acidemia type I, propionic acidemia, methylmalonic acidemia (several subtypes), isovaleric acidemia, 3-methylcrotonyl-CoA carboxylase deficiency, multiple CoA carboxylase deficiency, 3-ketothiolase deficiency, 3-hydroxy-3-methylglutaryl-CoA lyase deficiency, 2-methylbutyryl-CoA dehydrogenase deficiency, and isobutyryl-CoA dehydrogenase deficiency.
Fatty acid oxidation disorders: MCAD, VLCAD, long-chain hydroxyacyl-CoA dehydrogenase deficiency, trifunctional protein deficiency, glutaric acidemia type II, carnitine uptake defect, carnitine palmitoyl transferase deficiency type II, and carnitine acylcarnitine translocase deficiency.
Endocrine disorders: Congenital adrenal hyperplasia and primary congenital hypothyroidism.
Hemoglobinopathies: Sickle cell disease, SC disease, sickle beta-thalassemia, and other hemoglobinopathies.
Lysosomal storage diseases: Krabbe leukodystrophy, Pompe disease, mucopolysaccharidosis type I, and mucopolysaccharidosis type II.
Other conditions: Cystic fibrosis, galactosemia, biotinidase deficiency, severe combined immunodeficiency (SCID), X-linked adrenoleukodystrophy, spinal muscular atrophy, Duchenne muscular dystrophy, congenital hearing loss, and critical congenital heart disease.

Some of the assays used by the ODH lab, including those for lysosomal storage diseases, SCID, SMA, and certain CFTR mutations in cystic fibrosis screening, have not been FDA cleared or approved. The department states it has independently validated their performance.⁶

How You Get the Results

Normal blood spot results go to the birth hospital and the baby’s healthcare provider, and parents usually hear about them at the first well-child visit. If anything is abnormal, the provider calls the family directly and arranges further testing or a specialist referral.⁷ The lab contacts the primary care provider by phone and fax, and a designated genetic center often receives a copy. Depending on the condition, next steps may be a repeat blood spot, targeted follow-up labs, an urgent office visit, or an emergency specialist referral.³

Ohio Administrative Code 3701-55-08 sets where babies with confirmed abnormal results are referred. Metabolic, endocrine, genetic, and immune disorders go to board-certified pediatric subspecialists in endocrinology, medical genetics, or immunology, or to an approved cystic fibrosis center. Babies with confirmed sickle cell disease or another hemoglobinopathy are referred to a pediatric hematologist and to a state-funded regional sickle cell project for counseling and follow-up. The specialist must report the diagnosis and disposition back to the Director of Health within 30 days.⁸

It’s worth knowing that an abnormal screen is not a diagnosis. Screening casts a wide net, so some flagged babies turn out to be healthy carriers or to have benign variants. Confirmatory testing is what settles the question.

What It Costs You

Hospitals and birthing centers buy the screening kits from ODH and bill the cost through insurance as part of the bundled payment for the delivery. Ohio Medicaid treats the fee as part of the birth reimbursement rather than a separate line item.⁹ ODH covers shipping between the facility and the lab.

The kit fee has climbed as the panel has grown. In a rulemaking published in September 2025, the department proposed raising the total fee from $98.63 to $185.00, split between a $138.51 laboratory services fee and a $46.49 genetics and sickle cell services fee.⁹ For a parent, this is a hospital cost rather than a bill you receive separately.

Can You Refuse?

Ohio Revised Code Section 3701.501 makes screening mandatory, and the only legally recognized basis for refusal is a religious objection.¹⁰ A parent who objects must sign a form acknowledging the “possible devastating consequences” to the child’s health, and a copy of the refusal goes to the Ohio Department of Health.¹¹ The refusal must be documented using ODH-provided forms or forms meeting the department’s minimum warning requirements.¹²

Krabbe disease screening has a separate opt-out. Because Krabbe is not on the federal Recommended Uniform Screening Panel, Ohio law lets parents decline that specific test by telling hospital staff before the blood sample is drawn.¹³

Recent Additions to the Panel

Duchenne Muscular Dystrophy

Ohio became the first state to universally screen newborns for Duchenne muscular dystrophy when testing began on April 22, 2024, under a mandate in House Bill 33 signed by Governor Mike DeWine on July 5, 2023.¹⁴ The test uses a creatine kinase (CK-MM) enzyme assay on the same blood spot card. The threshold depends on when the sample was taken: a CK-MM level of 1,990 ng/mL or higher is inconclusive in a baby tested before 48 hours, dropping to 571 ng/mL for a baby tested after 72 hours. Inconclusive or elevated results prompt a repeat test once the infant is at least 14 days old and weighs at least 2,000 grams.¹⁵

The state estimates the screen will identify roughly 35 babies with Duchenne each year out of more than 129,000 annual births.¹⁶ Confirmed cases are referred to one of three Certified Duchenne Care Centers: Nationwide Children’s Hospital in Columbus, Akron Children’s Hospital, or Cincinnati Children’s Hospital Medical Center.¹⁴

Spinal Muscular Atrophy

SMA was added to the panel effective May 28, 2022.¹⁰ Early detection matters because gene therapy, the treatment of choice when SMA is caught before symptoms appear, can prevent disease progression. Untreated, babies with the most severe form develop progressive muscle weakness within six months and typically die in childhood.⁶

Krabbe Disease

Ohio began screening for Krabbe on July 1, 2016, one of the first states to do so. Krabbe is not on the federal RUSP, and the federal Advisory Committee on Heritable Disorders in Newborns and Children declined nominations to add it in 2009 and again in 2023.¹⁷ The screen measures GALC enzyme activity on the dried blood spot, with low activity triggering second-tier genetic testing. Reduced enzyme activity can also show up in carriers or in people with a pseudo-deficiency genotype who will never develop disease, which is one reason parents can opt out of Krabbe specifically.

A study of 12 families at Nationwide Children’s Hospital who received false-positive Krabbe results found that parents experienced significant distress around the initial disclosure, though all ultimately said they supported continued screening. The study recommended that genetic counselors be more deeply integrated into the screening process.¹⁸

1
Ohio Department of Health. When to Collect Newborn Screening Specimens
2
Ohio Legislative Service Commission. OAC Rule 3701-40-06
3
Ohio AAP. Newborn Screening Provider Presentation
4
Cornell Law Institute. Ohio Admin. Code 3701-54-03
5
HRSA. Ohio Newborn Screening
6
Ohio Department of Health. Newborn Screening Panel
7
Ohio AAP. ODH Newborn Screening Provider Flyer
8
Cornell Law Institute. Ohio Admin. Code 3701-55-08
9
Ohio Department of Health. Proposed Fee Rule Amendments
10
Ohio Legislative Service Commission. ORC Section 3701.501
11
Ohio Department of Health. Newborn Screening Religious Objection and Release Form
12
Cornell Law Institute. Ohio Admin. Code 3701-55-09
13
Ohio Department of Health. Krabbe Disease Newborn Screening Insert
14
Parent Project Muscular Dystrophy. Duchenne Newborn Screening Milestone
15
Ohio Department of Health. Duchenne Muscular Dystrophy Testing
16
Parent Project Muscular Dystrophy. Ohio to Begin Screening Newborns for Duchenne
17
LIDSEN Genetics. Krabbe Disease Newborn Screening
18
OhioLINK. Krabbe Disease Newborn Screening Study