Are Newborns Tested For Sickle Cell? | Parent Quick Guide

Yes, newborn screening in the hospital checks for sickle cell disease using a heel-prick blood spot, with results sent to your baby’s doctor.

Parents want a clear answer and a simple plan. Hospital teams run a routine heel stick on every baby to look for serious conditions, including hemoglobin problems. That single card of dried blood can spot sickle cell disease and trait early so care starts on time.

What Newborn Screening For Sickle Cell Looks Like

The process is quick and standardized. A nurse or technician warms your baby’s foot, cleans the heel, and places a few drops of blood onto a special filter paper card (blood spot screening). The card goes to a state laboratory where the pattern of hemoglobin is measured. Programs use validated methods such as isoelectric focusing and high-performance liquid chromatography to classify the hemoglobin types and flag any pattern consistent with disease or carrier status.

Step What It Is Typical Timing
Heel Prick Few blood drops onto filter paper card 12–48 hours after birth
Lab Receipt State lab logs and scans the card Within 1–3 days
Primary Screen Hemoglobin pattern checked Same week
Result Release Report sent to birth facility and clinician About one week
Confirmatory Test Second blood test if flagged By age 2 months

In the United States, sickle cell conditions are part of routine state panels, and programs aim to return reports quickly so families and pediatric teams can act without delay. The screening looks for disease and carrier status. A flagged result triggers a call for confirmatory testing and a straightforward care plan.

Why Early Detection Matters For Your Baby

Early diagnosis allows time to start everyday steps that keep infants safer. Pediatric teams arrange confirmatory testing, teach parents how to spot fever or breathing trouble, and begin standard medicines when indicated. With that head start, children can receive vaccines on the right schedule, a written sickle plan, and regular visits with a hematology clinic.

Close Variant: Newborn Sickle Cell Test In Hospitals—What Parents Should Expect

Your hospital staff will explain each step and answer questions before the heel stick. The blood spot card identifies which hemoglobin types are present. If the screen suggests disease, the team orders a second test that proves the diagnosis. That second sample is vital because the first test is built for speed and sensitivity; the follow-up confirms the exact type so the care plan matches your child.

What The Initial Screen Can Show

Results fall into three broad buckets. First, a normal pattern with fetal and adult hemoglobin. Second, a carrier pattern that includes hemoglobin S alongside normal types. Third, a pattern that fits a sickle cell disease genotype such as SS or Sβ0. Any non-normal result leads to a written report and contact from your baby’s doctor or the state program.

Confirmatory Testing After A Positive Screen

The pediatrician or a hematology clinic draws another sample to specify the genotype. Confirmatory testing is time-sensitive because penicillin prophylaxis and vaccine planning begin in early infancy. Families also receive counseling on trait versus disease and what to share with future care teams and schools.

How Long Results Usually Take

Turnaround varies by location and workload, but most programs issue reports within a week after the lab receives the card. Urgent calls go out sooner if a severe pattern is suspected. If you are waiting and haven’t heard by the second week, call your baby’s doctor for an update. Clinics can access reports directly or contact the state laboratory.

Some states post timelines for report delivery. A typical schedule shows results seven days after the lab receives the card, with faster phone alerts when a serious disorder is suspected. Ask your clinic how your state handles urgent calls and portal notifications.

What Happens If The Screen Flags Sickle Cell Disease

When the report suggests disease, the next steps are clear. Your baby’s doctor or the program will arrange confirmatory testing, refer to a sickle cell clinic, and start routine medicines as indicated by age and genotype. The most common early medicine is daily penicillin V to lower the risk of severe pneumococcal infection. This protective step typically starts by two months of age and continues through early childhood alongside a complete pneumococcal vaccine series.

Families also receive a simple plan for fever care. Because certain bacteria pose higher risks in these children, any fever calls for prompt evaluation. Your clinic will give you a temperature threshold and an after-hours number so you never wonder about the next move.

Trait Versus Disease

Carrier status means a child has one copy of the hemoglobin S gene but not the disease. Kids with trait usually have no day-to-day symptoms and do not need specialty care. The screen reports trait so families have accurate records and can share this information later during family planning. If both parents carry a variant, future pregnancies carry a one-in-four chance of a child with disease.

How The Screening Works In The Lab

State programs rely on dried blood spot cards because they are stable, easy to ship, and work with multiple analytical methods. Two lab approaches are common. Isoelectric focusing separates hemoglobin types by charge to produce a clear banding pattern. High-performance liquid chromatography separates them by retention time to produce a trace with peaks that correspond to each type. Many labs use more than one method to increase confidence and to sort out rare combinations. Programs may add molecular testing to resolve rare or ambiguous patterns. That extra layer helps labs separate look-alike results and shortens the time from a flagged screen to a confirmed diagnosis.

Common Result Patterns You Might See

Report language varies by state, but the structure is similar. A result might list letters such as F, A, and S or name a likely genotype. F stands for fetal hemoglobin, A for typical adult hemoglobin, and S for the sickle variant. More letters appear when other variants are present. The report often includes a recommendation line that states whether confirmatory testing is needed.

Reading The Report: Codes, Meanings, Next Steps

Screen Code Likely Meaning Next Step
FA Normal pattern Routine care
FAS Carrier (trait) Offer counseling
FS Suggests SS disease Confirm genotype
FSA Suggests SC disease Confirm genotype
FSA with beta markers Suggests Sβ thalassemia Confirm genotype

Confirmatory testing clarifies the exact genotype and guides the care schedule. Your team will share a written plan that includes vaccination timing, fever rules, and clinic visits. Ask for a copy of the report for your records and for any new clinicians.

What Parents Can Do Right Now

Before Leaving The Hospital

Verify that the blood spot card was collected and mailed. Take a photo of the discharge sheet that lists your pediatrician. Make sure your phone number and address are correct on the newborn screen requisition. If your baby is discharged early, ask when the repeat sample will be collected if the first was obtained before 24 hours of life.

During The First Two Weeks

Call the clinic if you have not heard about results by the second week. Ask who receives the report and how you will be contacted. If the report suggests disease, expect a quick follow-up call to arrange the second test and a hematology referral. Keep your schedule open for a short appointment so confirmatory work happens quickly.

After A Confirmed Diagnosis

Begin daily penicillin V as prescribed and pick up the first refill before it runs out. Follow the vaccine timetable, including pneumococcal shots. Save a digital copy of the sickle action plan on your phone. If your child develops a fever that meets the threshold your clinic gave you, call right away. Keep an eye on hydration and comfort during viral illnesses and use the clinic’s guidance on when to be seen.

Privacy, Consent, And Data

States manage newborn screening under public health law. Most use an opt-out model, while a few require written consent. Labs hold residual blood spot cards for a finite time, mainly for quality control or authorized research. You can ask your program about storage rules and whether you may direct early destruction. Your hospital can share the contact details for the state laboratory if you want the exact policy.

Clearing Up Common Myths

“Only Certain Babies Are Checked.”

All babies born in US hospitals are screened, regardless of background. Universal screening prevents missed cases and speeds care for every family.

“A Negative Screen Means No One In The Family Carries A Gene Variant.”

A normal newborn screen rules out disease in the baby but says nothing about parents. Adult testing is separate. Your primary care clinic can order a simple hemoglobin test if you want to know your own status.

“Screening Hurts.”

The heel stick is quick. A pacifier, skin-to-skin contact, or a small amount of sucrose solution can soothe your baby during the brief poke.

Where To Learn More

You can read the plain-language CDC newborn screening page for an overview of conditions included and why states run these tests. For treatment steps after a confirmed diagnosis, see the AAP penicillin guidance summary that aligns with pediatric practice.

Method And Sources

This guide draws on US public health materials and peer-reviewed summaries. State programs collect dried blood spots from a heel stick between 12 and 48 hours after birth, then measure hemoglobin types with standard lab methods. Programs aim to release reports within about a week of specimen receipt, and confirmatory testing proceeds before two months of age so routine medicines and vaccines start on time.