Family Resources

If you are in need of specific information regarding resources available in New Jersey to assist with healthcare, health insurance, financial assistance, case management, educational services, general information and support the following websites are helpful:

NEW JERSEY HEALTH LINK
A comprehensive healthcare consumer information website serving the needs of all individuals living in New Jersey. This website will provide you with details about services and eligibility as well as contact names and phone numbers.

NEW JERSEY DEPARTMENT OF HUMAN SERVICES
Programs and services available for children and families related to Health Care, Welfare Services and Disability Programs.

FAMILY SUPPORT CENTER OF NJ
Provides information and referral on family support programs and services to families caring for a child with a disability, medical condition, rare disease or other special needs.

AMERICAN ACADEMY OF PEDIATRICS CHILDREN WITH SPECIAL HEALTH CARE NEEDS
Information from the nation's leading child health experts regarding various health topics, policy statements, best practice guidelines and standards.

EXCEPTIONAL PARENT ANNUAL RESOURCE GUIDE
A directory of national resources on specific conditions and services

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.

Part of the process of collecting information should involve exploring options for paying for treatment and ongoing care for your child. There may be extra medical and therapeutic costs associated with caring for a child with a birth defect. In addition to health insurance, there are many resources available to parents of children with birth defects, 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 resources.

Seek early intervention. When your child has a birth defect, 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. In addition to identifying, evaluating, and treating your child's needs, early intervention programs will:

• Tell you where you can get information about your child's disability,
• Help you to learn how to care for your child at home,
• Assist you in determining your payment options and in finding free services,
• Help you make important decisions about your child's care, and
• Provide counseling to you and your family.

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 child's primary doctor. Although some hospitals already have teams in place 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 what risks you might have 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 it can take place even while your child is still in the womb. 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 final outcome.

To get information on specific research about your child's disability, contact the national organization for that disability. The March of Dimes, the National Information Center for Children and Youth With Disabilities, and the National Organization for Rare Disorders, Inc. (NORD) also may have information about current research.

Reviewed by: Louis E. Bartoshesky, MD, MPH, and Linda Nicholson, MS, MC
Date reviewed: January 2006