Sickle cell disease and your baby
Sickle cell disease (also called SCD) 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. In a healthy person, red blood cells are round and flexible. They flow easily in the blood. A person with SCD has red blood cells that are stiff and can block blood flow. This can cause pain, infections and, sometimes, organ damage and strokes.
In the United States, SCD is most common among blacks and Hispanics. SCD affects about 1 in 500 black births and about 1 in 36,000 Hispanic births in this country. SCD is also common among people with family from Africa, the Caribbean, Greece, India, Italy, Malta, Sardinia, Saudi Arabia, Turkey or South or Central America.
If your baby is born with SCD, he may be generally healthy or he may need special care throughout his life.
SCD 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. This is called a gene change or a mutation. Parents can pass gene changes to their children. Sometimes a gene change can cause a gene to not work correctly. Sometimes it can cause birth defects or other health conditions. A birth defect is a health condition that is present in a baby at birth.
Your baby has to inherit a gene change for sickle cell from both parents to have SCD. If he inherits the gene change from just one parent, he has sickle cell trait. This means that he has the gene change for SCD, but he doesn’t have SCD. When this happens, he’s called a carrier. A carrier has the gene change but doesn’t have the condition.
Sickle cell trait cannot become SCD. A few people with sickle cell trait show signs of SCD, but this is unusual. Most don’t.
Yes. Common kinds of SCD 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 is caused when a baby gets one sickle cell gene change from each parent.
- Hemoglobin SC. This condition is caused 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 is caused when a baby gets a sickle cell gene change from one parent and a gene change for beta thalassemia from the other parent.
All babies have a newborn screening test for SCD. Newborn screening checks for serious but rare and mostly treatable conditions at birth. It includes blood, hearing and heart screening. With newborn screening, SCD can be found and treated early.
Before your baby leaves the hospital, his health care provider takes a few drops of blood from his heel. The blood is collected and dried on a special paper and sent to a lab for testing. The lab then sends the results back to your baby’s provider.
If newborn screening 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 can check to see if your baby has SCD or if there is some other cause for abnormal test results.
Some children with SCD may be generally healthy, while others may need special care. The most common health problems related to SCD 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:
- Antibiotic medicine. This is medicine that kills infections caused by bacteria.
- Blood transfusions. This means your baby gets new blood put into her 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 to treat hand-foot syndrome.
Infections, including pneumonia (lung infection) and meningitis (infection of the lining of the brain). Signs and symptoms may include:
- Breathing problems
- Pain in the bones
You can help protect your child from certain infections by making sure she’s up to date on her vaccinations. If your baby does get an infection, treatment usually is with antibiotic medicine. And taking regular regular antibiotic medicine helps prevent her 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 six or more times a year. To help prevent pain episodes in your child, make sure she:
- Drinks plenty of fluids
- Doesn’t get too hot or cold
- Stays away from places with high altitudes where oxygen levels are low
- Avoids exercise or activities that make her feel very tired
Treatment for pain episodes includes:
- Heating pads
- Over-the-counter pain relievers or fever reducers, like acetaminophen and ibuprofen. Over-the-counter means you can buy these without a prescription from your health care provider.
- Prescription pain medicines. You need a prescription from your baby’s provider for these medicines. A prescription is an order for medicine written by a health care provider.
- Hydroxyurea. This is a medicine that helps the body make a kind of hemoglobin (called fetal hemoglobin) that a baby makes before birth. The medicine may prevent red blood cells from sickling.
Splenic crisis. This condition happens when the spleen gets clogged with sickle cells and swells up. The spleen is an organ that filters blood in your body 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 condition can happen 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 for treatment. His provider may recommend using a special kind of ultrasound, called Doppler ultrasound, on the brain to find out your child’s risk for stroke. She 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 the eyes connect to. His provider may recommend regular eye exams. Laser treatment of the eyes may prevent further vision loss.
There is no widely available cure for SCD. But a small number of children with SCD 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. Stem cells are found in bone marrow. This is the spongy tissue inside some bones, like your hip and thigh bones. Stem cells also are found in umbilical cord blood, the blood in the umbilical cord and placenta. This blood can be collected after the umbilical cord is cut at birth. Talk to your health care provider if you’re thinking about collecting your baby’s umbilical cord blood.
In a stem cell transplant for SCD, stem cells taken from a healthy person are put into a person with SCD. 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 SCD.
Centers for Disease Control and Prevention (CDC)
National Heart, Lung and Blood Institute
Sickle Cell Disease Association of America
Last reviewed October 2014
See also: Sickle cell disease and pregnancy, Hemoglobin disorders, Newborn screening tests for your baby, Genetic counseling
Frequently Asked Questions
Can dad's exposure to chemicals harm his future kids?
Dad's exposure to harmful chemicals and substances before conception or during his partner's pregnancy can affect his children. Harmful exposures can include drugs (prescription, over-the-counter and illegal drugs), alcohol, cigarettes, cigarette smoke, chemotherapy and radiation. They also include exposure to lead, mercury and pesticides.
Unlike mom's exposures, dad's exposures do not appear to cause birth defects. They can, however, damage a man's sperm quality, causing fertility problems and miscarriage. Some exposures may cause genetic changes in sperm that may increase the risk of childhood cancer. Cancer treatments, like chemotherapy and radiation, can seriously alter sperm, at least for a few months post treatment. Some men choose to bank their sperm to preserve its integrity before they receive treatment. If you have a question about a specific exposure, contact the Organization of Teratology Information Specialists at www.otispregnancy.org.
Can Rh factor affect my baby?
The Rh factor may be a problem if mom is Rh-negative but dad is Rh-positive. If dad is Rh-negative, there is no risk.
If your baby gets her Rh-positive factor from dad, your body may believe that your baby's red blood cells are foreign elements attacking you. Your body may make antibodies to fight them. This is called sensitization.
If you're Rh-negative, you can get shots of Rh immune globulin (RhIg) to stop your body from attacking your baby. It's best to get these shots at 28 weeks of pregnancy and again within 72 hours of giving birth if a blood test shows that your baby is Rh-positive. You won't need anymore shots after giving birth if your baby is Rh-negative. You should also get a shot after certain pregnancy exams like an amniocentesis, a chorionic villus sampling or an external cephalic version (when your provider tries to turn a breech-position baby head down before labor). You'll also want to get the shot if you have a miscarriage, an ectopic pregnancy or suffer abdominal trauma.
Does cleft lip or cleft palate cause dental problems?
A cleft lip or cleft palate that extends into the upper gums (where top teeth develop) can cause your baby to have certain dental problems, including:
- Missing teeth
- Too many teeth
- Oddly shaped teeth
- Teeth that are out of position around the cleft
Every baby with a cleft lip or palate should get regular dental checkups by a dentist with experience taking care of children with oral clefts. Dental problems caused by cleft lip or palate usually can be fixed. If needed, your baby can get ongoing care by a team of experts, including:
- A dentist
- An orthodontist to move teeth using braces
- An oral surgeon to reposition parts of the upper jaw, if needed, and to fix the cleft
See also: Cleft lip and cleft palate
Does cleft lip or cleft palate cause ear problems?
Cleft lip does not cause ear problems.
Babies with cleft palate, however, are more likely than other babies to have ear infections and, in some cases, hearing loss. This is because cleft palate can cause fluid to build up in your baby’s middle ear. The fluid can become infected and cause fever and earache. If fluid keeps building up with or without infection, it can cause mild to moderate hearing loss.
Without treatment , hearing loss can affect your baby’s language development and may become permanent.
With the right care, this kind of hearing loss is usually temporary. Your baby’s provider may recommend:
- Having your baby’s ears checked regularly for fluid buildup
- Medicines for treating fluid buildup and ear infections
- Ear tubes if your baby has fluid in his ears over and over again. Ear tubes are tiny tubes that are inserted into the eardrum to drain the fluid and help prevent infections.
See also: Cleft lip and cleft palate
Does cleft lip or cleft palate cause problems with breastfeeding?
Babies with only a cleft lip usually don’t have trouble breastfeeding. Most of the time, they can breastfeed just fine. But they may need some extra time to get started.
Babies with cleft lip and palate or with isolated cleft palate can have:
- Trouble sucking strong enough to draw milk through a nipple
- Problems with gagging or choking
- Problems with milk coming through the nose while feeding
Most babies with cleft palate can’t feed from the breast. If your baby has cleft palate, he can still get the health benefits of breastfeeding if you feed him breast milk from a bottle. Your provider can show you how to express (pump) milk from your breasts and store breast milk.
Your baby’s provider can help you start good breastfeeding habits right after your baby is born. She may recommend:
- Special nipples and bottles that can make feeding breast milk from a bottle easier
- An obturator. This is a small plastic plate that fits into the roof of your baby’s mouth and covers the cleft opening during feeding.
See also: Cleft lip and cleft palate, Breastfeeding
Does cleft lip or cleft palate cause speech problems?
Children with cleft lip generally have normal speech. Children with cleft lip and palate or isolated cleft palate may:
- Develop speech more slowly
- Have a nasal sound when speaking
- Have trouble making certain sounds
Most children can develop normal speech after having cleft palate repair. However, some children may need speech therapy to help develop normal speech.
See also: Cleft lip and cleft palate
What are choroid plexus cysts?
The choroid plexus is the area of the brain that produces the fluid that surrounds the brain and spinal cord. This is not an area of the brain that involves learning or thinking. Occasionally, one or more cysts can form in the choroid plexus. These cysts are made of blood vessels and tissue. They do not cause intellectual disabilities or learning problems. Using ultrasound, a health care provider can see these cysts in about 1 in 120 pregnancies at 15 to 20 weeks gestation. Most disappear during pregnancy or within several months after birth and are no risk to the baby. They aren't a problem by themselves. But if screening tests show other signs of risk, they may indicate a possible genetic defect. In this case, testing with higher-level ultrasound and/or amniocentesis may be recommended to confirm or rule out serious problems.
What if I didn't take folic acid before pregnancy?
If you didn’t take folic acid before getting pregnant, it doesn't necessarily mean that your baby will be born with birth defects. If women of childbearing age take 400 micrograms of folic acid every day before and during early pregnancy, it may help reduce their baby’s risk for birth defects of the brain and spin called neural tube defects (NTDs). But it only works if you take it before getting pregnant and during the first few weeks of pregnancy, often before you may even know you’re pregnant.
Because nearly half of all pregnancies in the United States are unplanned, it's important that all women of childbearing age (even if they're not trying to get pregnant) get at least 400 micrograms of folic acid every day. Take a multivitamin with folic acid before pregnancy. During pregnancy, switch to a prenatal vitamin, which should have 600 micrograms of folic acid.
Last reviewed November 2012