All parents hope for a healthy child, but this sadly is not always what happens. However, there are some special groups, agencies, and parents who will be helpful. If a baby has a so-called "birth defect", your state's agency for children with a disability should be notified while the infant is still in the hospital. That way monetary and other aid may be available. Most states will cover the hospital bill if they are notified.
There are support groups for almost all disabilities. Some are helpful and unfortunately some are not and may give poor advice. If it is possible to find a parent who has a child with a similar problem, he or she can often tell you which groups are the best. You should be able to find specific agencies on the Internet. Also my book, Raising a Handicapped Child lists most of the agencies in the appendix.
The National Organization for Rare Disease or NORD can be extremely helpful. They can be found on the Internet or at 1-800-999-NORD. Hospital or agency social workers usually have a wealth of information, so I would contact one in the hospital where the baby is born.
One of the most important things for parents to do is to grieve and take care of themselves. This is a very difficult time to go through and spending long hours in the hospital may lead to illness or depression. Taking care of yourself allows you to do the best for your child.
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