Yes, you are born with sickle cell. Sickle cell disease (SCD) is an inherited condition present from conception: a baby develops it only when they inherit a sickle hemoglobin gene from both parents. You cannot catch it from someone else or develop it later in life. Symptoms usually appear only after the first few months, though, which is why many families are surprised when a healthy-looking newborn gets a positive screening result.
In my practice, “Are you born with sickle cell?” is one of the first questions families ask. Behind it are usually two more: “Why didn’t we know?” and “Could our next child have it?” This article answers all three and explains what sickle cell disease is, how it is inherited, and how it is managed.
What Is Sickle Cell Disease?
Sickle cell disease is a group of inherited red blood cell disorders caused by a change in the HBB gene, which carries the instructions for the beta chain of hemoglobin. Hemoglobin is the protein in red blood cells that carries oxygen. A single change in this gene produces hemoglobin S instead of normal adult hemoglobin A.
When hemoglobin S gives up its oxygen, it sticks together into long strands. These bend the red cell into a stiff, crescent or “sickle” shape. Sickled cells:
- Block small blood vessels, causing pain and organ damage
- Break down early, surviving roughly 10–20 days instead of the normal 120 days, which causes chronic anemia
- Damage the spleen, which raises the risk of serious infections
SCD is one of the most common hematological conditions worldwide. It is most common in people with ancestry from sub-Saharan Africa, the Mediterranean, the Middle East, India, and parts of Central and South America.
How Sickle Cell Is Inherited
Sickle cell follows an autosomal recessive pattern. Everyone has two copies of the HBB gene, one from each parent.
- One sickle gene plus one normal gene gives sickle cell trait. People with trait are carriers and usually have no symptoms.
- Two sickle genes (or one sickle gene plus another abnormal beta gene) give sickle cell disease.
When both parents carry sickle cell trait, each pregnancy has the same odds, regardless of how many children they already have:
| Outcome for each pregnancy | Chance |
|---|---|
| Sickle cell disease | 1 in 4 (25%) |
| Sickle cell trait (carrier) | 2 in 4 (50%) |
| Neither disease nor trait | 1 in 4 (25%) |
This is why sickle cell can appear in a family with no known history: two healthy carriers may not know they carry the gene until a child is diagnosed.
Types of Sickle Cell Disease
- HbSS (sickle cell anemia): two hemoglobin S genes; usually the most severe form.
- HbSC: one S gene and one hemoglobin C gene; often milder but still serious.
- HbS beta-thalassemia: one S gene and one beta-thalassemia gene; severity varies.
If You’re Born With It, Why Don’t Babies Show Symptoms?
Before birth and in early infancy, babies make mostly fetal hemoglobin (HbF), which does not sickle. Over the first months of life, fetal hemoglobin is gradually replaced by adult hemoglobin, and in a baby with SCD that adult hemoglobin is hemoglobin S. Symptoms therefore typically begin in the second half of the first year.
One of the earliest signs is dactylitis, painful swelling of the hands and feet. Others include irritability, pallor, jaundice, and fever from infection.
Symptoms and Complications
SCD varies widely between individuals, even within one family. Common problems include:
- Pain crises: sudden episodes of pain when sickled cells block blood flow, often in the bones, chest, or abdomen.
- Anemia: tiredness, pallor, and shortness of breath.
- Infections: a damaged spleen means bacterial infections can become serious quickly.
- Acute chest syndrome: a lung complication with chest pain, fever, and breathing difficulty that needs emergency care.
- Stroke: blocked blood flow to the brain, a risk even in young children.
- Splenic sequestration: blood pooling in the spleen, causing sudden severe anemia.
- Long-term organ damage to the kidneys, eyes, lungs, and joints.
With modern care, most people with SCD live into adulthood, and outlook continues to improve. Our article on the life span of sickle cell patients looks at the factors that influence it.
How Sickle Cell Is Diagnosed
Many countries include sickle cell in newborn screening, a heel-prick blood test done in the first days of life. A positive screen is confirmed with further testing:
- Hemoglobin electrophoresis or HPLC: identifies which hemoglobin types are present.
- Genetic testing: confirms the specific gene changes.
- Prenatal testing: possible through chorionic villus sampling or amniocentesis when both parents are carriers.
Adults who want to know whether they carry the trait can have a simple blood test, which is especially useful before starting a family.
Treatment and Daily Management
Early diagnosis allows care to begin before complications appear. Standard care includes:
- Penicillin prophylaxis in young children and a full vaccination schedule to prevent serious infections
- Hydroxyurea, which raises fetal hemoglobin and reduces pain crises and acute chest syndrome
- Folic acid to support red cell production
- Transcranial Doppler screening in children to detect stroke risk
- Blood transfusions to treat severe anemia and prevent stroke in high-risk patients
- Bone marrow (stem cell) transplant, which can cure SCD in suitable patients with a matched donor
- Gene therapies, a newer option approved in some countries for selected patients
Everyday habits help too: staying well hydrated, avoiding temperature extremes, and taking rest when unwell. For more, visit our sickle cell guide.
When to See a Doctor
Seek emergency care for anyone with sickle cell disease who has:
- A fever of 38.5°C (101.3°F) or higher
- Chest pain or difficulty breathing
- Sudden weakness, facial drooping, trouble speaking, or severe headache
- A swollen belly, or unusual paleness or lethargy in a child
- Pain that does not respond to usual home treatment
- A painful erection lasting more than a few hours
Frequently Asked Questions
Can you develop sickle cell later in life?
No. Sickle cell disease is genetic and present from conception. Some people with milder forms are diagnosed later because symptoms were subtle, but they had the condition from birth.
Can sickle cell trait turn into sickle cell disease?
No. Trait means you carry one sickle gene and one normal gene, and that does not change. Carriers can, however, pass the sickle gene to their children.
If both parents have sickle cell trait, will their child have the disease?
Not necessarily. Each pregnancy has a 1 in 4 chance of sickle cell disease, a 1 in 2 chance of trait, and a 1 in 4 chance of neither. Genetic counseling can help couples understand their options.
Is there a cure for sickle cell disease?
Bone marrow transplant can cure SCD for suitable patients, and gene therapies are a newer option in some countries. Most people are managed with medicines and preventive care, which greatly reduce complications.
