April 2011 - 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 those in children without 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 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 a 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 healthcare 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 may be extra medical and therapeutic costs associated with caring for a child with a birth defect. In addition to health insurance, many 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 resources.
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 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 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.
This information was provided by KidsHealth®, one of the largest resources online for medically reviewed health information written for parents, kids and teens. For more articles like this, visit KidsHealth.org or TeensHealth.org. © 1995-2011. The Nemours Foundation/KidsHealth®. All rights reserved.
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