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.
Document the information you receive. 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.
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.
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 omphaloceles, 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. Source: www.KidsHealth.org
You must be prepared to speak up and be an advocate in the medical care of your baby.
Ask for explanations.
Ask for support.