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Health Information For Parents
If your child has a birth defect, you might be feeling overwhelmed and unprepared. But you’re not alone — about 120,000 babies are born in the United States each year with birth defects, according to the Centers for Disease Control and Prevention (CDC).
It’s important to know that many people and resources are available to help you and your child.
Birth defects (also called congenital anomalies) are problems present at birth. There are many different types of birth defects, and they can range from mild to severe. Defects can be structural (like a cleft lip/palate, spina bifida, or a heart defect) or functional/developmental (like Down syndrome, deafness, or a metabolic disorder like phenylketonuria).
Some defects are inherited (passed on to a baby by his/her parents), while others have environmental causes. In many cases, the cause is unknown.
As the parent of a child with a birth defect, it’s important for you to:
Acknowledge your emotions. You might feel shock, denial, grief, and even anger. Accept those feelings, and talk about them with your spouse/partner and other family members. You also might consider seeing a counselor. Your doctor probably can recommend a social worker or psychologist.
Get support. Talking with someone who’s been through the same thing can help. Ask your doctor or a social worker if other parents in the area have children with the same condition. Consider joining a support group — ask the doctors or specialists for advice on finding a local or national support group, or search online.
Celebrate your child. Let yourself enjoy your baby the same way any new parent would — by cuddling and playing, watching for developmental milestones (even if they’re different from those in children without a birth defect), and sharing your joy with family members and friends. Many parents of babies with birth defects wonder if they should send out birth announcements. This is a personal decision — the fact that your baby has a health problem doesn’t mean you shouldn’t be excited about the new addition to your family.
Educate yourself. Try to learn as much as you can as soon as you can. Start by asking your doctors lots of questions. Record the answers, and if you’re not satisfied — or if a doctor doesn’t answer your questions thoroughly — don’t be afraid to get second opinions.
Other places to get information include:
Keep a file with a running list of questions and the answers you find, as well as suggestions for further reading and any materials your child’s doctor gives you. Keep an updated list of all health care providers and their phone numbers, as well as emergency numbers.
Explore options for paying for treatment and ongoing care for your child. There can be extra medical and therapeutic costs in caring for a child with a birth defect. Besides health insurance, other available resources include nonprofit disability organizations, private foundations, Medicaid, and state and local programs. A social worker can help you learn more about these.
Seek early intervention. Early intervention means bringing a team of experts together to assess a child’s needs and create a treatment program. Early intervention services can include feeding support, assistive technology (tools, devices, and aids that make everyday tasks easier for people with disabilities), occupational therapy, physical therapy, speech therapy, nutrition services, and social work services.
Besides identifying, evaluating, and treating your child’s needs, early intervention programs:
Your child’s doctor or a social worker at the hospital where you gave birth should be able to connect you with the early intervention program in your area.
Work as a team. Most children with birth defects need a team of professionals to treat them. Even if your child needs to see only one specialist, that person will coordinate care with your primary care provider. Some hospitals have teams ready to deal with problems such as heart defects, cleft lip and palate, or cerebral palsy. Still, you may find yourself being both the main contact between different care providers and the coordinator of your child’s appointments. As soon as possible, get to know the different team members. Make sure they know who else will be caring for your child and that you intend to play a key role.
Research continues into the causes of birth defects and ways to detect, prevent, and treat them. Technology plays a big part — for example, prenatal testing has gotten better and more precise.
Safer and more accurate tests include:
None of these tests can prevent birth defects, but they give a clearer, safer, and more accurate diagnosis at an earlier stage of pregnancy — giving parents more time to seek advice and consider their options.
Genetics research is advancing quickly. The Human Genome Project has identified most of the genes in the human body, but researchers are still working on understanding what the genes do. Many gene mutations that lead to a high risk for birth defects have been identified.
Early surgery is an option in the treatment of certain birth defects — and sometimes can take place even before a baby is born. Surgeons now can operate on fetuses to repair structural defects, such as hernias of the diaphragm, spina bifida, and lung problems. These procedures can be controversial, though, because they sometimes cause premature labor. And it’s still not clear whether they always can improve a child’s outcome.
To get information on specific research about your child’s disability, contact the national organization for that disability. Also, the March of Dimes, the National Information Center for Children and Youth With Disabilities, and the National Organization for Rare Disorders, Inc. (NORD), may have information about the latest research.
Some birth defects are minor and cause no problems; others cause major disabilities. Learn about the different types of birth defects, and how to help prevent them.
One of the most important things you can do to help prevent serious birth defects in your baby is to get enough folic acid every day – especially before conception and during early pregnancy.
Read the basics about genetics, including how certain illnesses, or increased risks for certain illnesses, pass from generation to generation.
Advances in genetic testing help doctors diagnose and treat certain illnesses. The type of test done depends on which condition a doctor checks for.
Gene therapy carries the promise of cures for many diseases and for types of medical treatment most of us would not have thoughtÂ possible.
Down syndrome is a condition in which extra genetic material causes delays in the way a child develops, both physically and mentally.
Cerebral palsy (CP) affects a child’s muscle tone, movement, and more. This article explains causes, diagnosis, treatment, and coping.
Spina bifida is a birth defect that involves the incomplete development of the spinal cord or its coverings. It’s usually detected before a baby is born and treated right away.
Genetic counselors work with people who are either planning to have a baby or are pregnant to determine whether they carry the genes for certain inherited disorders. Find out more.
Why does one kid have green eyes while another kid’s eyes are brown? It’s all in the genes! Find out how genes work, what happens when there are problems with genes, and more.
Genes play an important role in how we look and act, and even in whether we get sick. This article gives the lowdown on genes, genetic disorders, and new research into gene therapy.
Cerebral palsy is one of the most common developmental disabilities in the United States. It affects a person’s ability to move and coordinate body movements.
What’s up with Down syndrome? Find out in this article for kids.
Whether you feel confused, worried, scared, or excited, you’ll want to know how your life will change, what you can do to have a healthy baby.
Note: All information is for educational purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor.
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