You’ve just been given the news that your baby isn’t going to be born with the ten toes and ten fingers you’ve always naturally assumed he would have. Your dreams of him throwing that baseball with you in the yard, going on the monkey bars at the playground or attending his senior prom all seem to be hanging in the balance of uncertainty. On top of that, the doctors are still unsure if there are any other health issues that may have an effect on his future. You may feel sad, hurt, scared, unsure and/or angry and even more so alone.
It’s important that you first understand that you and your child are not alone. Though you may have never dreamed of a parent having to endure such news, truth is many parents have stood in your shoes. You may have never yourself noticed a child missing her hand or arm, but they are out there in good number, functioning within society. Secondly, it’s important that you understand that all of your feelings are okay, even if you are beating yourself up about your adverse feelings to your child’s physical appearance. In time, and perhaps with the love and support of those around you, you will learn to love your child just as she is. We’ve all grown accustomed to society’s view of “normal” and “perfect,” so it’s natural to view your baby as otherwise in these beginning stages.
Find someone whom you feel like you can talk to without judgment, whether that is your husband or wife, mother or father, close friend, a therapist, or someone from a local support group. As you talk out your feelings, acceptance will come. Also help your baby, who knows nothing different than his arm or hand difference, to have confidence in his difference by touching it as frequently as his “normal” hand – hold it, kiss it, tickle it, etc. Your child will grow to have positive associations with his arm or hand, which will help him not to be self-conscious about it down the road.
If you’re still in your pregnancy, you’re trying to picture your baby with her limb difference. It will be difficult until she is finally here, but you can find pictures of children with similar limb differences online or even arrange to meet with a family who has a child with a similar limb difference in person. If you can meet someone in person, it would be good for your psyche as you’ll not only be able to see what your child’s arm or hand may look like, but you’ll also see how the child herself has adjusted and carries on with her everyday life. If you’re not ready to meet with someone face-to-face, looking online is a feasible option, but be aware that you may see some children with more severe birth defects, so don’t cause more fear and anxiety for yourself.
The Nebraska Children with Upper Limb Deficiencies (NCULD) organization can provide you with support from parents who have stood where you now stand. Most are willing to meet with you if interested. You can also find pictures of some of the children in our group and read some of the families’ stories online by reviewing our website. We are here to help you through this journey, so please contact us with any questions or concerns.
Our Families Share Their Story