Congenital cataracts

What are congenital cataracts?

Congenital cataracts are birth defects of the eye. Birth defects are structural changes present at birth that can affect almost any part of the body. They may affect how the body looks, works or both. Birth defects can cause problems in overall health, how the body develops or how the body works.

A congenital cataract is when the lens of the eye is cloudy instead of clear at birth, making it hard to see. The lens is the tissue inside your eye that helps focus the light coming into your eye. Congenital cataracts can happen in one or both eyes. If congenital cataracts aren’t treated early, they can cause vision problems or blindness.

 There are two kinds of congenital cataracts:

1. Syndromic. This is when congenital cataracts happen along with other birth defects or health conditions. For example, some babies with congenital cataracts also have Down syndrome. Down syndrome is a genetic condition that includes a combination of birth defects, such as intellectual and developmental disabilities, heart defects, certain facial features, and hearing and vision problems.
2. Non-syndromic. This is when congenital cataracts are the only condition a baby has.

Congenital cataracts are rare in babies, but cataracts can happen at any age. They’re more common in adults age 50 and older. Cataracts are the leading cause of vision loss in the United States, but they can be treated with surgery. 

What causes congenital cataracts?

We don’t know what causes most congenital cataracts. More research is needed, but some causes may include:

Changes in genes or chromosomes. Some babies have birth defects because of changes in their genes (also called mutations) or changes in their chromosomes. Genes are part of your body’s cells that store instructions for the way your body grows and works. Genes are passed from parents to children. Chromosomes are the structures that hold genes.

Injury during pregnancy. Physical trauma during pregnancy may cause injury to a baby’s eyes in the womb and lead to congenital cataracts. A pregnant woman may have physical trauma from a car accident, a sudden fall or from intimate partner violence (also called IPV). IPV is physical violence, sexual violence, stalking or psychological harm caused by a current or former partner. An abusive partner may try to hurt a pregnant woman’s body. This physical abuse may include hitting, slapping or kicking a woman. During pregnancy, physical abuse can harm both a pregnant woman and her baby. Visit The National Domestic Violence Hotline website or call 1-800-799-7233 for IPV resources and support.

Having hypoglycemia during pregnancy. This is when your blood sugar levels (also called glucose levels) fall too low. If you have diabetes that isn’t under control, you may develop hypoglycemia. Diabetes is a medical condition in which your body has too much sugar in your blood. This can damage organs in your body, including blood vessels, nerves, eyes and kidneys. If you have diabetes, work with your health care provider to manage your condition during pregnancy.

Premature birth. This is birth that happens too early, before 37 weeks of pregnancy. Premature babies have more health problems and may need to stay in the hospital longer than babies born later.

Getting infections during pregnancy. You can pass certain infections to your baby during pregnancy that may cause birth defects and other health problems in your baby. Having these infections during pregnancy may increase your baby’s risk for congenital cataracts and other health problems:

Infections caused by herpes viruses. Herpes viruses are a group of viruses that can cause many different infections. Once you get infected with a herpes virus, the virus stays in your body for the rest of your life. The virus may become active again in your body, but it may or may not cause symptoms each time. Herpes viruses that may be linked to congenital cataracts include:

• Chickenpox (also called varicella). This is an infection that causes an itchy skin, rash, blisters and fever. It’s a common infection in children that spreads easily.
• Cytomegalovirus (also called CMV). This is a common infection that spreads through body fluids, like saliva and urine. Most people with CMV infection have no symptoms.
• Genital herpes. This is a sexually transmitted infection (also called an STI, sexually transmitted disease or STD) caused by herpes simplex virus type 1 (also called HSV-1) or herpes simplex virus type 2 (also called HSV-2). You can get genital herpes from unprotected sex or through direct contact with an infected person’s herpes sore, fluid from a herpes sore, or skin around the mouth or genitals.

 Other infections. Other infections that may be linked to congenital cataracts include:

• Influenza (also called the flu). This is a virus that can cause serious illness. The flu spreads easily from person to person. Symptoms include fever, cough, sore throat, body aches and fatigue.
• Measles. Measles is a virus that can cause serious health complications, including premature birth, pneumonia, swelling in the brain and even death. If you have measles, you may have a high fever, cough, runny nose, watery eyes and rash. It spreads easily to others when an infected person coughs, sneezes or talks.
• Polio (also called poliomyelitis). Polio is an infection caused by poliovirus. It affects the brain and spinal cord and can cause paralysis. This is when you can’t move one or more parts of your body. Polio now is very rare in the United States.
• Rubella (also called German measles). This is an infection that causes mild flu-like symptoms and a rash on the skin.
• Toxoplasmosis. This is an infection caused by a parasite that lives in soil. You can get infected by eating undercooked meat or touching cat poop. Toxoplasmosis can cause problems like body aches, headache, fatigue (being really tired) or fever.
• Syphilis. This is an STI that at first causes sores and a rash. You also can get syphilis by having direct contact with (touching or kissing) an infected person’s syphilis sore.

Can you prevent congenital cataracts?

Congenital cataracts can’t always be prevented. But here’s what you can do to help reduce your baby’s risk of having congenital cataracts:

Before pregnancy

• Get a preconception checkup. This is a medical checkup you get with your prenatal care provider before pregnancy to help make sure you’re healthy when you get pregnant.
• Make sure your vaccinations are up to date. Talk to your provider about vaccinations you need before you get pregnant. Vaccinations can help protect you from certain infections that harm you and your baby during pregnancy. For example, you may need the MMR vaccination that protects you from measles, mumps and rubella, or you may need the chickenpox vaccination, which comes in two doses. If you need the MMR vaccination, wait at least 4 weeks after you get the shot before you try to get pregnant. If you need the chickenpox vaccination, wait at least 1 month after you get the second shot before you try to get pregnant. If you don’t have a record of your vaccinations, your provider can check your immunity (protection) for certain infections with a blood test.
• Get checked for infections, like STIs. Early testing and treatment can help you have a healthy pregnancy and a healthy baby.
• Work with your provider to manage chronic health conditions. If you have a chronic health condition, like diabetes, work with your health care providers to manage your condition and treatment (including medicine) before pregnancy.
• Learn about your genes. If you, your partner, your children or someone in your families has a birth defect of the eye, you may want to see a genetic counselor. This is a person who is trained to help you understand about genes, birth defects and other medical conditions that run in families and how they can affect your health and your baby’s health. In many cases, congenital cataracts happen without any family history of the condition. This means no one in your family or your partner’s family has congenital cataracts.

During pregnancy

Get early and regular prenatal care. This is medical care you get during pregnancy. At each prenatal care checkup, your provider checks on you and your growing baby. Call your provider and go for your first prenatal care checkup as soon as you know you’re pregnant. And go to all of your prenatal care checkups, even if you’re feeling fine. If you have a chronic health condition, work together with your prenatal care provider and other providers to manage your condition during pregnancy.

Wear your seatbelt every time you ride in a car. Doing this can help protect both you and your baby from trauma and injury from a car accident. Here’s how to wear your seatbelt correctly:

• Always wear both the lap belt and the shoulder strap. Make sure they both fit you snugly. 
• Buckle the lap belt under your belly and over your hips. Never place the lap belt across your belly. 
• Put the shoulder strap between your breasts and off to the side of your belly. Never place the shoulder strap under your arm. 
• If it adjusts, fix the length of the shoulder strap to fit you correctly. 

If you’re in a car accident, get medical treatment quickly to make sure you and your baby are OK. If you have contractions, pain in your belly or blood or fluid leaking from your vagina, call your health care provider right away. 

Prevent infections. Here’s how:

• Talk to your provider about getting a flu shot before flu season.
• Wash your hands with soap and water often, especially after using the bathroom, changing diapers or blowing your nose.
• Prepare food safely and don’t eat undercooked meat.
• Avoid contact with animal poop. For example, have someone else change your cat’s litter box.
• Wear gloves when touching soil during gardening or yard work.
• Don’t share food and utensils with babies and young children.
• Have safe sex. This means having sex with only one person who doesn’t have other sex partners. If you’re not sure if your partner has an STI, use a barrier method of birth control. Barrier methods include male and female condoms and dental dams. A dental dam is a square piece of rubber that can help protect you from STIs during oral sex.

How do you know if your baby has congenital cataracts?

The American Academy of Ophthalmology and the American Academy of Pediatrics recommend that all babies have their eyes checked for vision problems like cataracts before they leave the hospital. Your baby’s provider can sometimes diagnose congenital cataracts with these tests:

• A physical exam. Your baby’s provider gives her a physical exam to check for congenital cataracts and other birth defects. A cataract usually looks like a white reflection in a baby’s pupil. The pupil is the black circle in the center of your eye. Your baby’s provider can shine a special lighted magnifying device on your baby’s eyes to find cataracts.
• Blood tests. These tests can check for infections and genetic conditions.
• X-rays or computed tomography. Your baby may need X-rays or computed tomography (also called CT or CAT scan) of her brain. A CT scan uses special X-ray equipment and powerful computers to make pictures of the inside of your body.

If your baby’s provider thinks she has cataracts, your baby needs an exam by a pediatric ophthalmologist. A pediatric ophthalmologist is a doctor with special training to treat eye problems in babies and children.

Sometimes congenital cataracts don’t show up right away. Call your baby’s provider if she has any of these signs of cataracts:

• Seems to be unaware of the world around her
• Cloudy gray or white color in her pupil
• Unusual, fast eye movements
• Her pupils don’t have a red glow in photos, or her two pupils look different in photos

How are congenital cataracts treated?

Babies with cataracts need early and regular care from a pediatric ophthalmologist. Early treatment is important, because it can prevent vision loss and help your baby’s eyes develop properly. Treatment depends on whether cataracts affect a baby’s vision. A baby with small cataracts that don’t affect his vision may just need regular checkups with a pediatric ophthalmologist, especially if the cataracts are in both eyes. But most babies with cataracts need special treatment, which may include:

Surgery. Most babies with congenital cataracts need surgery. During surgery, a pediatric ophthalmologist who specializes in congenital cataract surgery makes a small cut in your baby’s eye and removes the cloudy lens. Some babies with cataracts may need additional surgery.

A new type of lens. After cataract surgery, your baby needs a new type of lens to help him see. This may include:

• Contact lenses. Special contact lenses can be used to help your baby see after cataracts are removed from one or both eyes.
• Intraocular lens. This is a special plastic lens that a surgeon places in your baby’s eye during surgery. It replaces the original lens. Researchers are still studying the use of intraocular lenses in babies, but studies have shown positive results. This surgery usually is done at age 1 or later.

Many babies need to wear glasses together with a contact lens or an intraocular lens. Some babies need glasses only, especially if they had cataracts removed from both eyes and they have trouble wearing contact lenses.

Patch therapy. Your baby may need patch therapy if her eyesight is better in one eye than in the other. In patch therapy, you place an eye patch over your baby’s healthier eye to strengthen the weaker eye. Your baby’s provider recommends how many hours your baby wears the patch each day. Patch therapy trains your baby’s brain to send signals to the weaker eye to improve his eyesight. This can prevent or treat amblyopia (also called lazy eye). Amblyopia is when one eye and the brain don’t work together properly, causing vision problems. Early treatment of amblyopia can prevent severe vision loss or blindness in the affected eye. Babies with cataracts may have patch therapy until their eyes are fully developed, which happens around ages 8 to 10.

Early intervention services (also called EIS). Babies with cataracts who have vision problems may need special services to help them learn and develop. Getting early intervention services as soon as possible can help improve your baby’s development as he grows. These services can help children from birth through 3 years old learn important skills. Services include therapy to help a child talk, walk, learn self-help skills and interact with others. Babies and children with vision problems also may need orientation and mobility (also called O&M) training as part of early intervention services. O&M training helps children use their other senses to learn about their environment and learn how to move around safely. Visit the Early Childhood Technical Assistance Center to find your state’s contact information for early intervention services.

Babies who have cataract surgery may be at higher risk for developing other eye problems like glaucoma. Glaucoma is a group of diseases that damage the eye’s optic nerve. The optic nerve connects the retina to the brain. Glaucoma can lead to vision loss and blindness. Regular visits with a pediatric ophthalmologist are important to watch for any problems and help your baby’s eyesight develop properly.

Last reviewed: July 2019