If you’re wondering how to get sickle cell test results from birth, here’s the short answer: your baby was almost certainly screened automatically through your state’s newborn screening program (NBS), and results are typically mailed to your pediatrician within 1–3 weeks. You can call your baby’s doctor, your birthing hospital, or your state’s newborn screening lab directly to request them. In most U.S. states, results are not automatically sent to parents — they go to the ordering provider.
This catches many families off guard. You leave the hospital, weeks pass, and nobody calls. That usually means results were normal, but “no news is good news” isn’t a reliable system when we’re talking about a condition that affects roughly 1 in 365 African-American newborns and about 1 in 16,300 Hispanic-American newborns. Let me walk you through exactly how to track down your baby’s results, what the result codes actually mean, and what happens if the screen comes back positive.
How Newborn Sickle Cell Screening Works
Within 24–48 hours of birth, a nurse collects a few drops of blood from your baby’s heel onto a special filter paper card (often called a Guthrie card). This single sample screens for 35+ conditions depending on your state — sickle cell disease is one of them. Every U.S. state and the District of Columbia has mandated sickle cell screening since 2006.
The blood sample goes to a state or regional laboratory, where it’s analyzed using high-performance liquid chromatography (HPLC) or isoelectric focusing (IEF) — techniques that separate and identify different types of hemoglobin in your baby’s blood. Results are then reported back to the hospital or physician listed on the screening card.
How to Actually Get Your Baby’s Results
This is the part most articles skip. Here are your concrete options:
- Call your pediatrician’s office. Results are typically sent to the provider listed on the NBS card within 5–14 days. Ask the nurse to pull up the newborn screening report specifically.
- Contact the birthing hospital. If you haven’t established a pediatrician yet, the hospital’s newborn nursery or medical records department can often retrieve results.
- Call your state’s newborn screening program directly. Every state maintains a lab — search “[your state] newborn screening program” online. Many states now have parent portals where you can request results.
- Request a copy in writing. Under HIPAA, you have the legal right to your child’s medical records. If anyone gives you the runaround, submit a written records request.
Typical turnaround is 5–14 business days for initial results. If sickle cell disease or another critical condition is detected, most states have rapid notification protocols — you’ll usually hear within 5–7 days, often by phone.
What the Result Codes Mean
Newborn screening results use hemoglobin letter codes that can be confusing if nobody explains them. Here’s what you might see on the report:
| Result Code | What It Means | Action Needed |
|---|---|---|
| FA | Normal — fetal hemoglobin (F) dominant, adult hemoglobin A present | None. This is a normal result. |
| FAS | Sickle cell trait — carrier status, not disease | Genetic counseling recommended; child is generally healthy |
| FS | Presumptive sickle cell disease (HbSS) — only fetal and sickle hemoglobin detected | Urgent hematology referral and confirmatory testing |
| FSC | Hemoglobin SC disease — a form of sickle cell disease | Hematology referral and confirmatory testing |
| FSA | Sickle beta-plus thalassemia (possible) | Hematology referral and confirmatory testing |
| FC | Hemoglobin C disease | Follow-up with pediatrician; usually milder condition |
The letter order matters. FAS (trait) is very different from FS (disease). In FAS, the “A” appearing before the “S” means normal adult hemoglobin is the dominant type after fetal hemoglobin — this child is a carrier. In FS, there’s no “A” at all, which signals sickle cell disease until proven otherwise.
What If the Screen Is Positive?
A positive newborn screen is not a final diagnosis. It’s a flag that says “this needs more investigation.” Confirmatory testing — usually a repeat hemoglobin electrophoresis or HPLC done at 3–6 months of age when fetal hemoglobin levels have dropped — is always required.
If your baby screens FS, FSC, or FSA, expect the following to happen quickly:
- Your state NBS program or pediatrician will contact you, often within days
- A referral to a pediatric hematologist will be placed
- Your baby will likely start prophylactic penicillin by 2 months of age — this single intervention reduces fatal pneumococcal infections by 84% in children with sickle cell disease
- Pneumococcal vaccination will be prioritized on an accelerated schedule
- Genetic counseling will be offered to both parents
Starting penicillin prophylaxis early is one of the most important reasons newborn screening exists. Before universal screening, many children with sickle cell disease weren’t diagnosed until they had a life-threatening crisis — sometimes as late as 6–12 months of age.
Sickle Cell Trait vs. Sickle Cell Disease
This distinction causes enormous confusion. About 1 in 13 African Americans carries sickle cell trait (FAS result). These individuals have one normal hemoglobin gene and one sickle hemoglobin gene. They are carriers, not patients — in the vast majority of cases, sickle cell trait causes no symptoms and requires no treatment.
However, trait status matters for family planning. If both parents carry the trait, each pregnancy carries a 25% chance of producing a child with sickle cell disease. This is why genetic counseling is recommended even for trait results.
What If You Never Got Results?
It happens more than it should. Families move, change doctors, or simply fall through the cracks. If your child is now months or even years old and you never confirmed their newborn screen results, you have options:
- Request a hemoglobin electrophoresis from your pediatrician — this is a simple blood draw that can be done at any age
- Contact your state NBS program with your child’s name, date of birth, and birth hospital — most states retain dried blood spots and records for years (retention periods vary from 1 month to indefinitely depending on the state)
- A sickle cell solubility test (Sickledex) can screen older children, though it won’t identify the specific hemoglobin variant
Frequently Asked Questions
How long does it take to get sickle cell test results from birth?
Most states report newborn screening results within 5–14 business days. Critical results like a presumptive FS (sickle cell disease) pattern are often fast-tracked and reported within 5–7 days. Routine normal results may take the full 2–3 weeks.
Can I refuse newborn sickle cell screening?
Technically, most states allow parents to refuse newborn screening on religious grounds, but only a handful make the opt-out process straightforward. In practice, declining screening is strongly discouraged because early detection of sickle cell disease literally saves lives. No state charges families for the screen.
Will the hospital automatically tell me if something is wrong?
Not necessarily. Results go to the provider on record, not directly to parents. If a critical condition is detected, the state NBS follow-up team will attempt to reach the family through the hospital and listed physician — but if your contact information is wrong or your pediatrician hasn’t been established, delays happen. Be proactive and call for results yourself.
My baby’s result says FAS — should I be worried?
FAS means your baby has sickle cell trait, not sickle cell disease. Your child is a carrier and will almost certainly live a completely normal, healthy life. The main significance is for future reproductive decisions. Discuss it with your pediatrician and consider genetic counseling if both parents may carry a hemoglobin variant.
Is the newborn heel prick test accurate for sickle cell?
Yes, newborn screening has a sensitivity above 99% for detecting sickle cell disease. False negatives are extremely rare. However, premature infants or babies who received blood transfusions before screening may need repeat testing. A positive screen always requires confirmatory testing at a later date.
When to See a Doctor
Contact your pediatrician or a pediatric hematologist if:
- You haven’t received newborn screening results within 3 weeks of birth
- Your baby received a positive or abnormal screen and you haven’t been contacted by a specialist
- Your baby develops unexplained fever, irritability, swelling of hands or feet (dactylitis), or pale skin in the first few months — these can be early signs of sickle cell complications
- You have a family history of sickle cell disease and want to confirm your child’s hemoglobin status
- You or your partner were told you carry sickle cell trait and want genetic counseling before or during pregnancy
Don’t wait for the system to come to you. One phone call to your pediatrician can confirm your baby’s results and give you peace of mind — or, if needed, connect you with the right specialists early enough to make a real difference.
