Now What?

You have told some close friends and family about your expected baby’s condition; you have cried and laughed and wondered, “How could this have happened?” Here are some suggestions that should bring you and your family some well-earned peace of mind:

1. Get informed

The balance is to gather as much information as possible without becoming obsessive. You have your child’s whole life to learn about their limb difference. Knowledge is power, but too much information can create overload. So take it slowly. Learn about your child’s condition, review hand/arm/limb development, research helpful specialists, and learn what kinds of issues to anticipate as your child develops. “Armed” with knowledge, you will feel more confident as you make difficult choices about how best to help your child. Some parents have interviewed pediatricians and visited hand clinics at the nearest children’s hospital and met with staff even before their child was born. Here is a list of questions to ask your child’s specialist, and you’ll want to get The Hand Book: An Informational Guide for Parents of Children with Hand Differences, by Nina Lightdale-Miric, MD and Sarah Tuberty, OTD, OTR/L.

2. Find support!

Like every parent in your shoes, you want your child to have the exact same opportunities in life that he would have had with a “typical” hand/arm. How you react to your child’s difference will affect him more than any other thing that you will do for him over the course of his life. Your child will internalize the numerous verbal and physical cues that you give him about his hand/arm well before they ever realizes that his hand is different. So give yourself, your family, and your child a huge gift and find the people or organizations that will help you deal with the situation, like a professional therapist or a support group. Connecting to other parents who have children with hand/arm/limb differences will help you feel less isolated and anticipate issues that may arise. Encourage your spouse and other family members to seek help, too.

3. Find role models & peers for you and your child

If possible, even before your child knows they are different, give them repeated opportunities to meet other children like them. It will make a world of difference for your child and for you and your family to know that they have peers. The acceptance they will experience in a group like this will be truly astonishing.

4. Learn & explore more

Some next steps could be purchasing a doll or toy with a similar limb difference as your child’s. Learn about options here
Learn about choosing high quality picture books for your child here
Access a list of support groups, camps, clothing, and other resources here
Here is a list of questions to ask your child’s specialist

Posted in Pregnancy and Birth