OpenMFM Patient Education

Sickle Cell Disease

and Your Pregnancy

What you need to know at your first visit

Sickle cell disease can affect your pregnancy in important ways. Your care team wants to get ahead of any problems early — that is what your first visit is all about.

For patients with Sickle Cell SS disease (HbSS) This handout supports, not replaces, your care team's advice

What Is Sickle Cell Disease? The Basics

A quick reminder
Sickle cell disease is a condition you were born with. Your red blood cells are shaped like a "C" or sickle instead of a round disc. This shape causes them to get stuck in blood vessels, which blocks blood flow and can cause pain and other problems.
  • Normal red blood cells are round and flexible — they move easily through blood vessels
  • Sickle cells are stiff and sticky — they can block blood flow and break down faster
  • When sickle cells break down too fast, your body may not have enough healthy red blood cells — this is called anemia

How Does Sickle Cell Affect Pregnancy?

Why your pregnancy is closely watched

Pregnancy puts extra stress on your body. For women with sickle cell disease, this can mean a higher chance of certain problems.

  • Higher blood pressure (preeclampsia) — your care team will watch for this closely
  • Baby growth — your baby may need to be checked more often to make sure they are growing well
  • Pain crises — sickle cell pain episodes can happen more often during pregnancy
  • Anemia — your blood counts may need to be checked regularly
The good news: When sickle cell disease is managed carefully during pregnancy, many women have healthy babies. Early planning makes a big difference.

Your Care Team

You will have several specialists working together
Maternal-Fetal Medicine (MFM) High-risk pregnancy specialist

Oversees your pregnancy care and watches for complications.

Hematologist Blood specialist

Manages your sickle cell disease during pregnancy.

OB Provider Your primary pregnancy doctor

Coordinates your overall care and delivers your baby.

Having a team is normal and expected for sickle cell pregnancies. It is not a sign that something is wrong — it is how high-quality care works.

Blood Tests at Your First Visit Why So Many?

Each test has a specific reason

Your first visit includes a lot of blood tests. Here is why each group matters:

  • Complete blood count (CBC) — checks your hemoglobin and blood cell levels; your baseline
  • Reticulocyte count and LDH — measures how fast your red blood cells are breaking down
  • Hemoglobin type test — confirms your specific sickle cell type and HbS level
  • Kidney tests — sickle cell can affect the kidneys; we need to know your starting point
  • Liver tests — checks for any liver involvement from sickle cell
  • Urine protein test — establishes your baseline so we can detect high blood pressure problems later
These tests are not just routine pregnancy labs. They create a starting point that helps your team spot any changes as your pregnancy progresses.

Blood Type and Safety Tests Important

Protecting you if you ever need a blood transfusion

People with sickle cell disease sometimes need a blood transfusion during pregnancy. We do special blood tests now to keep you safe if that happens.

  • Your blood is tested for your exact blood type — not just A, B, or O
  • We test for specific proteins on your red blood cells called antigens
  • This detailed matching is done so that if you ever need blood, your body will not react badly to it
Why this matters: Getting mismatched blood can cause a serious reaction. Your care team will flag your chart so that any blood you receive is specially matched to you.

Your Medicine: Hydroxyurea

An important medicine change during pregnancy

If you were taking hydroxyurea before pregnancy, you should have already stopped taking it.

  • Hydroxyurea is a medicine that helps sickle cell disease
  • It is not safe to take during pregnancy
  • Your doctor will give you a different plan to manage your sickle cell while you are pregnant
If you are still taking hydroxyurea, tell your doctor right away. This is one of the first things your care team will ask about.

Baby Aspirin — Starting at 12 Weeks

A small medicine with a big purpose

Your doctor will likely ask you to take low-dose aspirin (81 mg) starting around 12 weeks of pregnancy.

  • Sickle cell disease puts you at higher risk for high blood pressure and preeclampsia in pregnancy
  • Low-dose aspirin helps lower that risk
  • It is safe for your baby at this dose
This is a standard recommendation for women at high risk of preeclampsia. You do not need to be having high blood pressure right now to benefit from it.

What About Your Baby? Genetic Counseling

A question worth answering early
  • Sickle cell disease is passed down through genes
  • Whether your baby is at risk depends on the baby's father's genes
  • If the father has never been tested, your team may recommend a blood test for him

Possible results:

  • Father has no sickle cell trait → baby is a carrier but will not have sickle cell disease
  • Father is a carrier → baby has a chance of having sickle cell disease
  • Genetic counseling can help you understand the options and make decisions you feel good about

Warning Signs to Call Your Doctor Act Fast

Do not wait — call right away if you have
  • Severe pain anywhere in your body — especially chest, belly, or back
  • Shortness of breath or trouble breathing
  • High fever (over 101°F / 38.3°C)
  • Headache that does not go away, or vision changes
  • Swelling in your face or hands that comes on suddenly
  • Decreased baby movement
If you are unsure, call. Your care team would rather hear from you than have you wait. Sickle cell complications can move quickly.

Your First-Visit Checklist

Before you leave today
  • [ ] All baseline blood tests and urine tests ordered
  • [ ] Your medicine list reviewed — hydroxyurea stopped if applicable
  • [ ] Plan for starting baby aspirin at 12 weeks
  • [ ] Follow-up appointment scheduled with MFM and hematology
  • [ ] Partner blood test discussed if needed
  • [ ] You know which number to call if you have a pain crisis or other urgent symptom
  • [ ] Your blood bank safety flag is in place
You are not alone in this. Sickle cell disease in pregnancy is manageable with the right team and the right plan. Your job is to show up to your visits and call when something feels wrong.

Key Message

What to remember
Sickle cell disease makes your pregnancy higher risk — but higher risk does not mean something bad will happen. It means your team pays closer attention. The tests at your first visit are the foundation for everything that follows.
  • Show up early — first-trimester visits matter most
  • Know your warning signs — and call without hesitation
  • Tell every provider you have sickle cell disease, including the ER
  • Bring your full medicine list to every visit
Sources: EvidenceMD (2026), American Journal of Obstetrics and Gynecology, American Society of Hematology

Source: EvidenceMD — Workup for Prenatal Sickle Cell SS Disease (2026-04-27) Reading level target: 8th grade Render with: marp --html --theme-set ".\output\marp\OpenMFM\openmfm-patient.css" ".\output\marp\OpenMFM\Sickle Cell in Pregnancy - Patient Handout.md" -o ".\output\marp\OpenMFM\Sickle Cell in Pregnancy - Patient Handout.html"

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