Congenital Limb Differences: Discussing it with Your Older Children

When Jennifer went in for her 19-week ultrasound, she learned that her daughter would be born missing her right hand. One of the first things she and her husband, Cal, did was discuss their daughter’s difference with their three boys. “We were very forthright with our three older boys. We explained that they were going to have a sister and that she would be born missing a hand,” writes Jennifer. “We were very matter-of-fact about it, showed them photos of other similar children, and let them know that we would all help her grow up just as they had.”

This is an excellent way to approach your children when you learn that their younger sibling will have a limb difference. You may discover your child’s limb difference during a routine ultrasound, or you may find out when they are born. Either way, it’s best to bring it up as soon as possible, to help your other children process the idea and ask any questions they may have.

With the questions they have, be sure to only answer the question they are asking — that is, don’t provide too much information; don’t overwhelm them. Or as this NPR article puts it, “Give them the facts, but at a pace they can manage.” Depending on the age of your first-born child(ren), you may be returning many times to this topic. Do your best to be patient with them. You may find reading books with your kids about children with a limb difference helpful.

Honesty about your feelings, and your partner's feelings, on the matter will help your child process their own feelings. If you are concerned, for instance, that other kids may not be nice to the new baby because of their difference, you can share that worry if it is age-appropriate for your child.

Most of all, just make sure the lines of communications are open. Be sure to spend time with each of your children alone in the weeks following your initial discussion, so that they know you are there to talk when they need it. As Jennifer writes: “Children are very curious when confronted with something new, but they are also very accepting and adaptable. We talked about Amber’s difference quite a bit before she was born. When she finally arrived, her limb difference was an interest to them, but they mostly focused on this wonderful little baby girl who had come into our lives.” We feature Amber in our patient profile videos.

Have you found out that your baby will have a limb difference? Or have they already arrived, and you are trying to navigate the world of parenting your sweet new child? If you have any questions, please feel free to reach out to us. If you are a parent of children, one of whom has a limb difference, and have advice for your fellow parents, please comment below.

Outside resources:

• Supporting siblings | Limbs 4 Kids
• Hands to Love
• Helping Hands Foundation
• Amputee Coalition – List of books that may help children understand limb loss/difference

For more Arm Dynamics articles, see related resources here:

• Resources for Parents of Children with Upper Limb Differences or Limb Loss
• Congenital Limb Differences: What to Know Before Your Child is Born
• Prosthetics for Children
• Terminal Devices for Babies, Children and Adolescents
• When Should My Child with a Limb Difference See a Prosthetist?