When Baby Isn't Perfect: Dealing with a Difficult Diagnosis


Expecting a baby is exciting. Usually the news of a pregnancy starts us on a nine-month quest for the perfect crib, the right car seat, a meaningful name and stimulating toys —even if it's the second or third child. By the time baby arrives, the nursery is ready, the camera has new batteries and relatives anxiously await the call that baby is here.

Delivery day has an excitement of its own and ends with you holding your little perfect bundle of joy. But what if baby isn't perfect?

Joy can turn to despair with the simple words, "There's a problem with your baby." And sometimes those words set a family on a long journey of surgeries, therapy, doctor visits and early intervention programs.

Sometimes more difficult than all of that is facing the stares of inconsiderate people, answering rude questions and dealing with the prejudice a child faces if he has an obvious disability.

As a birth mother, adoptive mother and foster mother, I've had several children with special needs including speech delays, ADHD, developmental and motor delays, autism, cleft palate and lip, club foot, and missing or fused fingers and toes.

Here are some ways we have dealt with certain situations that might also work for you:

  • Enlist the support of close friends and relatives. Be as honest with them about the problems and fears as you can. Some of them may not understand or know what to say to you, but others will offer encouragement.
  • Help siblings know how to answer questions. My children were often asked "What's wrong with her face?" when their friends saw our baby with a cleft lip. They learned to tell adults, "She has a cleft lip" and to tell children, "That's just the way her lip grew, but it can be fixed." Teach your children to answer with as little or as much information as you want others to have.
  • Offer information about your child's problem to those who really are concerned. You will get a lot of nosy questions that don't need answered, but you will also get questions from people who really care. Often prejudice and fears are based in ignorance. If you can help those around you, especially those in groups and organizations you may be involved in, understand your child's problem, they may become sources of help and support.
  • Find a support group. Whether your child has Down syndrome, a heart condition or developmental delays, you need the support of others going through it or who have already gone through it. If you can't locate a support group in your area, call a local early intervention program or your child's pediatrician for help in finding one. If you have access to the Internet, you can also find lots of support there. Contact local organizations that work with babies and children up to age 3 who need extra help. Programs such as Early Intervention and others offer therapy, counseling and help in getting medical treatment. Your pediatrician should be able to put you in contact with the right agencies or guide you in the right direction.
  • Don't give up your dreams for your child, but adjust them to realistic ones based on your child's abilities.
  • Forgive those who just don't get it.

Katrina Cassel, M.Ed., lives with her husband, seven of their children and an assortment of pets Florida. She is the author of several books including: "The Middle School Survival Manual," "The Christian Girl's Guide to Being Your Best," "Just for Me: The Bible," "Just for Me: Friends," and "Just for Me: My Family." Visit www.katrinacassel.com for more information.

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