When Your Baby Has a Birth Defect

We see happy images of and tend to hear about only healthy babies. But many babies are born with problems called birth defects. These are abnormalities of structure, function, or body chemistry that will require medical or surgical care or could have some effect on a child's development.

About 150,000 babies are born in the United States each year with birth defects, according to the March of Dimes. There is a wide range of birth defects, from mild to severe, and they can be inherited or caused by something in the environment. In many cases, the cause is unknown. Often, doctors can detect a birth defect when they do prenatal tests.

If you've just found out that your child has a birth defect, you're probably experiencing many emotions. Parents in your situation often say that they feel overwhelmed and uncertain whether they will be able to care for their child properly. Fortunately, you aren't alone - with a little effort, you'll find that there are lots of people and resources to help you.

As the parent of a child with a birth defect, it's important for you to:

Acknowledge your emotions. Parents of children with birth defects experience shock, denial, grief, and even anger. Acknowledge your feelings and give yourself permission to mourn the loss of the healthy child you thought you'd have. Talk about your feelings with your spouse or partner and with other family members. You might also consider seeing a counselor. Your doctor may be able to guide you to a social worker or psychologist in the area.

One of the best things you can do for yourself and your child is to seek support. Getting in touch with someone who's been through the same thing can be helpful; ask your doctor or a social worker at your hospital if they know any other parents in the area who have children with the same condition. Joining a support group may also help - consult your child's doctors or specialists for advice about finding a local or national support group.

Celebrate your child. Remember to let yourself enjoy your child the same way any parent would - by cuddling or playing, watching for developmental milestones (even if they're different from what they would be if your child didn't have a birth defect), and sharing your joy with family members and friends. Many parents of children with birth defects wonder if they should send out birth announcements. This is a personal decision - the fact that your child has a health problem doesn't mean you shouldn't be excited about the new addition to your family.

Seek information. The amount each person would like to learn varies from parent to parent, but try to educate yourself as much and as soon as you are able. Start by asking your child's doctors lots of questions. Record the answers as best as you can. If you're not satisfied with the answers - or if a doctor is unable to answer your questions thoroughly - don't be afraid to seek second opinions.

Additional places to get information include:

• books written for parents of children with birth defects
• national organizations such as the March of Dimes, the National Information Center for Children and Youth With Disabilities, or those representing your child's specific birth defect
• support groups or other parents

Keep a binder 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. In addition, keep an updated list of all health care providers and their phone numbers, as well as emergency numbers, so you're able to reach them quickly and efficiently.