When a Child Suffers an Upper Limb Loss

Acquired upper limb loss in children may be rare, but the rarity doesn't matter when it happens in your family. No matter the reason for a child’s limb loss, be it a medical issue or an injury, it can be devastating to parents and other family members. Parents must grapple with imagining a different future than they expected for their child. While processing their own feelings, parents must also help the child cope with what happened. Grieving a limb loss is similar to how people grieve after losing a loved one, which is to say, the feelings of loss may be intense, but the process of grieving will be different for everyone.

Processing all of these feelings will require time, work and patience. One solace is that children are very resilient. The adults in your family may deal with the stress and memories of the amputation far longer than the child or their siblings. Another solace is that children who have limb loss almost never experience phantom limb pain — a small gift in a difficult time.

When your child asks questions about what happened to them and why it happened, keep in mind that initially, there’s no need to answer questions too deeply. Consider what the child is actually asking before you respond. You might start by asking your child what they think so that you can gauge how to answer. Keep things simple without going into too much detail. If you don’t know the answer or are unsure of how to answer, it’s okay to tell them that you don’t know. There’s no need to make your child think that you are an expert on medical issues. Instead, let them know that you will try to find the answer by talking to their doctor, prosthetist or therapist. Letting them know they are being cared for by a team helps them understand that they are important and that other people outside of their family want to see them thrive.

One way to help everyone process the loss is to watch videos and read books that feature people with an upper limb difference. Seeing other people with limb differences participate in normal, everyday activities can give hope to the affected child and their family. We have a list of suggested books in our Resources for Parents of Children with Upper Limb Differences or Limb Loss blog article. You may also find Book Basket and the Lucky Fin Project’s book lists helpful.

While books and videos are helpful, meeting people with limb differences, in person or virtually, is even better. Connecting with someone who has a similar amputation or life situation is invaluable. Our therapists may be able to help you contact a peer through our Patient Peer Support Network. Our Resources for Parents of Children with Upper Limb Differences or Limb Loss blog article features a list of support groups and websites.

Once you are ready to look toward the future, it’s helpful to know there are many options for upper limb prosthetic devices, and as your child grows, more advanced options will become available. Our team can educate you and your child on prosthetic options and help you understand how wearing a prosthesis can improve your child’s quality of life.

If you’re ready to see how a prosthetist and clinical therapy specialist can help your child, please contact us. You are also welcome to comment below if you have experience with this subject, or if you have questions. We hope your child and your family are doing as well as possible under difficult circumstances.

For more information, see related Arm Dynamics articles here:

• Resources for Parents of Children with Upper Limb Differences or Limb Loss
• The Lived Experience: Peer-to-Peer Support by Arm Dynamics Patients
• Following Your Amputation, When Should You Meet with a Prosthetist?
• Organizations That Provide Financial and Emotional Support to People with a Limb Difference
• Why Do We Have Therapists On-Site at Each of Our Centers?