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Caring for a Seriously or Chronically Ill Child

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 a birth defect. 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. Doctors may detect a birth defect during prenatal testing.

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 they feel overwhelmed and uncertain about whether they’ll be able to care for their child properly.

Steps to Take

Fortunately, you aren’t alone — you’ll find that many people and resources are available 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 might be able to recommend 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 there are other parents in the area who have children with the same condition. Joining a support group may also help — ask the doctors or specialists for advice on finding a local or national support group or search online.

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 those in children without a birth defect), and sharing your joy with family members and friends. Many parents of kids 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.

Getting Help and Information

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 doctors lots of questions. Record the answers as best 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.

Other 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 a specific birth defect
  • support groups or other parents

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. 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.

Part of this process of collecting information should involve exploring options for paying for treatment and ongoing care for your child. There can be extra medical and therapeutic costs associated with caring for a child with a birth defect. Besides health insurance, other resources are available, including nonprofit disability organizations, private foundations, Medicaid, and state and local programs. One of the hospital social workers should be able to help you learn more about these.

Seek early intervention. Early intervention is usually the best strategy. Designed to bring a team of experts together to assess your child’s needs and establish a program of treatment, early intervention services include feeding support, identification of assistive technology that may help your child, occupational therapy, physical therapy, speech therapy, nutrition services, and social work services.

Besides identifying, evaluating, and treating your child’s needs, early intervention programs will:

  • tell you where you can get information about the disability
  • help you to learn how to care for your child at home
  • help you determine your payment options and tell you where you can find services for free
  • help you make important decisions about your child’s care
  • provide counseling

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.

Use a team approach. Most children with birth defects require a team of professionals to treat them. Even if your child needs to see only one specialist, that person will need to coordinate care with your primary doctor. Although some hospitals already have teams ready to deal with problems such as heart defects, cleft lip and palate, or cerebral palsy, you may find yourself having to serve as both the main point of contact between the different care providers and the coordinator of your child’s appointments. As soon as you are able, 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.

The Future of Birth Defects

Research into the environmental and genetic causes of birth defects is ongoing. Technology contributes to understanding and preventing defects in various ways — for example, prenatal testing is growing increasingly sophisticated.

Safer and more accurate tests include:

  • results of ultrasound tests and magnetic resonance imaging (MRI), which are sometimes combined with information from blood tests to determine the risk of having a child with certain birth defects
  • maternal blood screening to determine risk of chromosomal abnormalities
  • amniocentesis and chorionic villi sampling
  • pre-conception counseling to help you understand any risks for having a child with a birth defect

Although none of these tests can prevent birth defects, 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 is working on identifying all of the genes in the human body, including gene mutations that are associated with a high risk for birth defects.

Early surgery is becoming an option in the treatment of some birth defects — and can take place even before a child is born. Surgeons now operate on fetuses to repair structural defects, such as hernias of the diaphragm, spina bifida, and lung malformations. These treatments can be controversial, however, because they can cause premature labor. And it’s still a bit unclear as to whether they ultimately improve the 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 and the National Information Center for Children and Youth With Disabilities and the National Organization for Rare Disorders, Inc. (NORD) may have information about current research.

Reviewed by: Patricia G. Wheeler, MD
Date reviewed: September 2012