Understanding Sickle Cell Carrier Status

Important information about your genetic test results and your pregnancy

You are a carrier for sickle cell trait. This means you have one copy of the sickle cell gene.

Being a carrier does not mean you have sickle cell disease. You are healthy and your pregnancy is not at increased risk because you are a carrier.

We'll discuss what this means for you, your baby, and your pregnancy.

What Does Being a Carrier Mean?

Carrier (Sickle Cell Trait)

You have one normal gene and one sickle cell gene.

Key points about being a carrier:

Being a carrier does not affect your health or your pregnancy. You do not need special monitoring or treatment because of carrier status.

Why Does This Matter for My Baby?

What happens depends on your partner's genetic status.

We need to test your partner. If your partner is also a carrier (or has sickle cell disease), there is a chance your baby could inherit sickle cell disease.

If your partner is NOT a carrier:

Most partners test negative for carrier status. Partner testing is a simple blood test that gives us the information we need.

If Both Parents Are Carriers

When both parents are carriers, here are the possible outcomes for each pregnancy:

25%
Not a carrier
Two normal genes
25%
Carrier
One sickle gene
25%
Carrier
One sickle gene
25%
Sickle cell disease
Two sickle genes

Each pregnancy has these same chances. This pattern happens every time, no matter how many children you have.

If both parents are carriers, we offer genetic counseling to discuss your options.

What Is Sickle Cell Disease?

Sickle Cell Disease

A condition where red blood cells become crescent-shaped ("sickle" shaped) instead of round. These cells can block blood vessels and cause pain and organ damage.

People with sickle cell disease may experience:

Sickle cell disease is serious, but treatable. People with sickle cell disease can live full lives with proper medical care and new treatments.

Living with Sickle Cell Disease

Severity Varies

Some people have:

  • Mild symptoms
  • Few pain episodes
  • Near-normal life

Others Have

More challenges:

  • Frequent pain
  • Hospital visits
  • Organ problems

Available treatments include:

Medical care for sickle cell disease has improved significantly. Children born today have better outcomes than ever before.

What Happens Next: Your Options

1
Partner Testing
2
Genetic Counseling
3
Decide on Testing
4
Prenatal Care

Step 1: Partner Testing

A simple blood test to see if your partner is also a carrier.

If your partner IS a carrier:

Prenatal Testing Options

If both parents are carriers, these tests can tell if your baby has sickle cell disease:

Test When How It Works
CVS
(Chorionic Villus Sampling)
11–14 weeks Small sample from placenta
Amniocentesis 15–20 weeks Small sample of amniotic fluid
Testing at birth After delivery Newborn screening includes sickle cell

Prenatal testing is optional. Some families choose testing. Others wait until birth. Both choices are okay.

If Your Baby Has Sickle Cell Disease

Your pregnancy will continue to be healthy. Sickle cell disease does not affect fetal development or cause pregnancy complications.

During pregnancy:

After birth:

Babies with sickle cell disease feel healthy at birth. Problems usually don't start until 4–6 months of age, giving time to set up care.

Early Treatment Makes a Difference

When sickle cell disease is known at birth, we can start:

Preventive Care

  • Penicillin to prevent infections
  • Folic acid supplements
  • Vaccinations on schedule
  • Regular check-ups

Family Support

  • Education about warning signs
  • Pain management plans
  • Connection to support groups
  • Specialty care team

Early diagnosis and treatment greatly improve outcomes. Children who start treatment at birth have fewer complications and better quality of life.

What Can You Do?

Your Next Steps

  • Get your partner tested (if not done already)
  • Ask questions—we are here to help
  • Meet with genetic counseling if both carriers
  • Make informed decisions at your own pace

Remember:

We are your partners in this journey. No question is too small. We will support whatever decisions you make for your family.

Resources and Support

Talk to your care team:

National organizations:

Key Takeaways

You are a carrier—you are healthy.

Partner testing tells us the risk to your baby.

You have options for testing and planning.

We will support you every step of the way.