Designate a spokesperson. The first hours and days after your baby's birth may be a difficult time. Just as you're learning about her disability, family and friends are calling to hear the "good news." Relieve the social pressure by appointing a relative or close friend to inform others about your newborn's condition.
Centralize your baby's care. Select one person as the overall coordinator of your baby's medical care. This can be your pediatrician, another health professional who is closely involved with his treatment, or even you or your spouse. Whomever you choose should make you feel comfortable and be willing to answer your questions and to work with the other doctors who'll be involved in your baby's care. If you assume the role yourself, be sure to get medical records or summaries from every professional who sees your baby and keep them together in a binder you can bring to each appointment.
Nurture your baby...and yourself. As overwhelmed as you may feel by the problems facing your family and the decisions you need to make, your child needs all the love and affection you would give any baby. Right now, you're anxious, fearful, and even mournful at the loss of the perfect baby you imagined she would be, but try not to become so worried that you can't relax and enjoy your new child. Touching, holding, and comforting your newborn will be tremendously beneficial for both of you. Also, don't forget to celebrate her arrival. Send out announcements, take photos, and pass out chocolate cigars. You've been blessed with a baby who's special in many ways.
Prepare siblings. If you have older children, explain your baby's condition to them as soon as possible. Kids may think they did something to cause the defect, so be sure to explain that the problem is no one's fault. If you don't know what to say or are concerned that they won't understand, ask your pediatrician or social worker for help in breaking the news.