Sickle cell disease and your baby

Babies and birth defects

Key Points

Sickle cell disease (also called SCD) is an inherited condition that affects a person’s red blood cells.

When a person has sickle cell disease, the red blood cells get stuck and clog the blood flow.

There are different kinds of sickle cell disease, including sickle cell anemia, hemoglobin SC and hemoglobin S-beta thalassemia.

Your baby can be tested for sickle cell disease as part of newborn screening tests. This allows babies who have sickle cell disease to be identified quickly and treated early.

You can be tested in pregnancy to identify if your baby has sickle cell disease

People with sickle cell disease can have other health problems. These problems are different for each person and can range from mild to severe.

Sickle cell disease is a condition in which the red blood cells in your body are shaped like a sickle (like the letter C).

Red blood cells carry oxygen to the rest of your body. Red blood cells are usually round and flexible. They flow easily in the blood. In a person who has sickle cell disease, the red blood cells are stiff. This can block blood flow, causing pain, infections and, sometimes, organ damage and strokes.  This is called a sickle cell crisis..

In the United States, sickle cell disease is most common among the Black and the Hispanic communities. About 100,000 people have sickle cell disease. Of these, about 90 percent are Black people and 10 percent are people who are Hispanics. Sickle cell disease is also common among people from Africa, the Caribbean, Greece, India, Italy, Malta, Sardinia, Saudi Arabia, Turkey and South and Central America.

If your baby is born with sickle cell disease, they may be generally healthy or they may need special care throughout life.

What causes sickle cell disease?

Sickle cell disease is inherited. This means it’s passed from parent to child through genes. A gene is a part of your body’s cells that stores instructions for the way your body grows and works. Genes come in pairs—you get one of each pair from each parent.

Sometimes the instructions in genes change. Parents can pass gene changes to their children. Sometimes changes in genes can cause them to work incorrectly. Sometimes it can cause birth defects or other health conditions.

To have sickle cell disease, a baby has to inherit a gene change for sickle cell from both parents. If they inherit the gene change from just one parent, they have what’s called the sickle cell trait. This means that they have the gene change for sickle cell disease, but they don’t have the disease itself. When this happens, they’re called a carrier and they have sickle cell trait.

Sickle cell trait cannot become sickle cell disease. Some people who have sickle cell trait show signs of the disease, but this is unusual. Most do not.

Are there different kinds of sickle cell disease?

Yes. Common kinds of sickle cell disease are:

  • Sickle cell anemia (also called hemoglobin SS). Hemoglobin is the part of red blood cells that carries oxygen to the rest of the body. Sickle cell anemia occurs when a baby gets one sickle cell gene change from each parent and has two sickle cell genes.
  • Hemoglobin SC. This condition occurs when a baby gets one sickle cell gene change from one parent and one gene change for hemoglobin C (another abnormal type of hemoglobin) from the other parent.
  • Hemoglobin S-beta thalassemia. This condition occurs when a baby gets a sickle cell gene change from one parent and a gene change for beta thalassemia from the other parent. 

How do you know if your baby has sickle cell disease or sickle cell trait?

In the United States, all babies can be tested for sickle cell disease when they’re born as part of newborn screening. Before your baby leaves the hospital, their health care provider takes a few drops of blood from the heel. The blood is collected and then sent to a lab for testing.

If the test results aren’t normal, it simply means your baby needs more testing. Your baby’s provider can recommend another kind of test, called a diagnostic test. This test checks to see whether your baby has sickle cell disease or if there is some other cause for abnormal test results.

Prenatal testing of the pregnant person can reveal the presence of the sickle gene and further testing can show if the unborn baby will have sickle cell disease.

What problems can sickle cell disease cause?

The most common health problems related to sickle cell disease are:

Acute chest syndrome. This condition is very serious and painful. It’s caused by an infection and/or blocked blood flow in the lungs. Signs and symptoms include breathing problems, chest pain and fever. Your child’s provider may recommend treatment with:

  • Antibiotics. This is medicine that kills infections caused by bacteria.
  • Blood transfusions. This means your baby gets new blood put into their body.
  • Pain medicines
  • Oxygen and medicines that help open up blood flow and improve breathing

Anemia. This condition happens when your baby doesn’t have enough healthy red blood cells to carry oxygen to the rest of his body. Signs and symptoms include:

  • Being pale
  • Tiring easily
  • Breathing problems
  • Slower growth and later puberty than healthy children

Treatment depends on your child’s symptoms and may include antibiotics and blood transfusion.

Hand-foot syndrome. This condition happens when the sickle cells block blood flow in your child’s hands and feet. Signs and symptoms include fever and pain, swelling or coldness in the hands and feet. Your baby’s provider may recommend pain medicine and fluids.

Infections, including pneumonia (lung infection) and meningitis (infection of the lining of the brain). Signs and symptoms may include:

  • Fever
  • Coughing
  • Breathing problems
  • Pain in the bones
  • Headaches

You can help protect your child from certain infections by making sure they're up to date on their vaccinations. If your baby does get an infection, they will likely be given antibiotic medicine. Taking antibiotics regularly can help prevent your baby from getting infections between 2 months and 5 years of age.

Pain episodes. These are common and happen when sickle cells block blood flow. Pain can occur in organs and joints. It can last a few hours, a few days or even for weeks. For some children, pain episodes can happen up to 6 or more times a year. To help prevent pain episodes in your child, make sure they:

  • Drinks plenty of fluids
  • Don't get too hot or cold
  • Stay away from places with high altitudes where oxygen levels are low
  • Avoid exercise or activities that make them feel very tired

Treatment for pain episodes includes:

  • Heating pads
  • Over-the-counter pain relievers or fever reducers, such as acetaminophen and ibuprofen. Over the counter means you can buy it without a prescription. A prescription is an order for medicine written by a health care provider.
  • Prescription pain medicines. You need a prescription from your baby’s provider for these medicines.
  • Hydroxyurea. This is a medicine that helps the body make a kind of hemoglobin (called fetal hemoglobin) that a baby makes before it’s born. The medicine may prevent red blood cells from sickling..
  • Admission to the hospital for intravenous fluids (IV fluids in the vein through a needle) to increased fluids in the veins and better circulation

Splenic crisis. This condition happens when sickle cells clog the spleen and cause it to swell. The spleen is an organ that filters blood and fights infection. Signs and symptoms include pain on the left side of the belly, weakness and a rapid heart rate. Splenic crisis usually is treated in the hospital with blood transfusions. Your child’s provider may recommend removing the spleen if your child has splenic crisis often.

Stroke. This medical emergency occurs when sickle cells block blood flow to the brain. Signs and symptoms include severe headache, weakness on one side of the body, and changes in alertness, speech, vision or hearing. If your child has any of these signs or symptoms, contact your health provider right away. The provider may recommend using a special kind of ultrasound, called Doppler, to find out your child’s risk for stroke. They may recommend a yearly ultrasound starting at age 2.

Vision problems. Vision problems and blindness can happen when sickle cells block blood flow in your child’s eyes or in the part of the brain that controls the eyes. Their provider may recommend regular eye exams. Laser treatment of the eyes may prevent further vision loss.

Is there a cure for sickle cell disease?

There is no widely available cure for sickle cell disease, but a small number of children with sickle cell disease have been cured through stem cell transplant.

Stem cells are cells that can develop into many different kinds of cells in the body. They serve as a repair system for the body. Bone marrow contains stem cells. This is the spongy tissue inside some bones, such as the hip and thigh bones. Umbilical cord blood and blood in the placenta also contain stem cells. This blood can be collected at birth after the umbilical cord. Talk to your health care provider if you’re thinking about collecting your baby’s umbilical cord blood.

In a stem cell transplant for sickle cell disease, doctors take stem cells from a healthy person and put them into a person who has sickle cell disease. This procedure is very risky and can have serious side effects, including death. Talk to your child’s health care provider to find out more about stem cell transplant for sickle cell disease.

More information

See also: Sickle cell disease and pregnancyNewborn screening tests for your babyGenetic counseling

Last reviewed: February 2024