Beginning Your Journey With Amputation: A Guide for Parents

Table of Contents

Hearing that your child needs an amputation can feel overwhelming. This guide was created with families in mind, to help you navigate your child’s amputation with greater confidence and understanding. It explains:

Why an amputation may be necessary
What to expect about your child’s amputation journey
How early rehabilitation supports healing and growth

Above all, this is a reminder that amputation is only one part of your child’s journey – not the end of their story. With time, care, and the support of family and care teams, your child will go on to live an active, confident and independent life.

Understanding Amputation: Why It Happens and What It Means

Amputation refers to the surgical removal of all or part of a limb (i.e. an arm or leg). Doctors may recommend an amputation when it is the safest or most effective way to treat a medical condition, injury, or infection. Some children may also be born with a limb difference or missing bones that make a limb hard to use. The goal is to support the child’s overall health, function, mobility, and development.

What makes amputation in a child different from amputation in an adult

Children are not just small adults. Their bones, muscles, and joints are still growing, so doctors have to think ahead. Because the reason for needing an amputation as a child may be unique, due to an illness or congenital limb difference, doctors sometimes use different amputation surgeries and strategies in children that allow for better healing and prosthesis fit for a growing child. They are adept at planning ahead for growth and a child’s changing needs.

Preparing for Your Child’s Amputation Surgery

In some cases, you may not be able to prepare for your child’s amputation surgery. However, in many cases the decision to pursue amputation will come after many visits with your trusted medical team. During your time working with the medical team, the surgeon will get to know your child and family, understand your goals, and discuss all available treatment options and anticipated outcomes (both surgical and non-surgical). During these visits, you may also meet other team members who will help with your child’s rehabilitation, such as:

Rehabilitation Physician, or PM&R doctor, who focuses on rehabilitative needs, including therapies, equipment, and functional rehabilitation
Physical Therapists and Occupational Therapists who help support your child’s rehabilitation to recover mobility, function, independence, and strength
A Prosthetist, who will help with your child’s prosthetic care, getting to know your child’s functional and mobility goals and designing and upkeeping the prosthesis as your child grows
Child life specialists, social workers, or psychologists who can help support your child and family’s emotional well-being on this journey.

Be sure to take the time to ask your doctor questions, and bring up any concerns you have about your child’s rehabilitation after amputation. If you are unable to meet with some of the above providers during your doctor’s visits, ask your physician what resources they have, or if they work closely with a care team to be able to speak to a prosthetist, PMR doctor, and therapists.

Your doctor should be able to provide specific details about your child’s surgery and recovery.

Please see this article for more information on questions to ask your child’s providers.

Helping your child get ready: talking about surgery in a kid-friendly way

Children often cope better when they know what to expect. Your words don’t have to be perfect – simple and honest is best.

For younger children, using dolls, stuffed animals, or simple drawings to show or demonstrate what is happening can help your child cope and prepare. A child life specialist or social worker with your medical team may be able to help provide age-appropriate support to help your child best prepare emotionally for this big change.

For school-age children and teens, offering a little more detail can be helpful. Encourage them to ask questions and use clear, direct words like “amputation” and “surgery”. It can also be reassuring to talk about activities they can return to doing once they’ve healed, what the healing process can look like, and introduce them to different members of the team so they can start to build relationships with their care team.

If your hospital has child life specialists, consider asking them to meet with your child. They often have books, pictures, dolls, and activities to help explain medical care in a way children can better understand to better prepare your child emotionally for medical procedures.

What to expect right after surgery

Your physician should discuss all of the details of your child’s surgery and recovery. It’s important to ask the doctors any questions you may have about the process, including:

What the hospital stay may look like before and after surgery
Details of the surgery procedure, how long it will take, and any risks that may be involved
What the physical or occupational therapy will look like in the hospital after the surgery
If your child will go home with a wheelchair, walker, or crutches, and how they will be trained on those support tools
What home accommodations your child may need after the amputation (a ramp for a wheelchair, additional bars or supports in the bathroom, extra supervision on stairs, etc.)
What kind of bandaging, covers/shrinkers, casts, or protectors your child will be wearing after surgery
When to follow-up with your doctor and what the post-operative plan may look like

While in the hospital, your child may see a physical or occupational therapy team to make sure they are safe and comfortable with mobility given their new amputation. This may include learning to use a walker, crutches, or wheelchair to safely move after their surgery. Preventing falls after surgery is very important to ensure your child’s wound heals properly without further injury.

Your child may go home with special bandaging, covers/shrinkers, or protectors on their limb. Be sure the medical team provides you with instructions on when to wear these covers, how often they should be changed, and gives you the opportunity to practice care before you go home from the hospital.

The medical team will make sure your family is comfortable with all of your child’s surgery after-care and the follow-up plan.

Some pain after surgery is normal, but it should be controlled. Call your child’s care team or seek medical care right away if you notice:

Fever or chills
Increasing redness around the incision
Abnormal or excessive heat coming from the limb
A bad smell or yellow/green drainage from the wound
Very sharp pains

Trust your gut. If something doesn’t feel right, it is always okay to call and ask for help.

Early Recovery and Rehabilitation: Helping Your Child Heal and Move Again

Once you go home, the focus will be on healing and settling back into daily life. The first few weeks are usually centered on caring for the incision, gentle movement, and slowly rebuilding strength. Be sure to follow the instructions from your doctor on any movement, incision care, and therapies.

Therapy often starts in the hospital and continues after discharge, either through outpatient visits or in your home. Progress may happen in small but important steps – it is important to follow the instructions of your therapist so your child can progress safely through their rehabilitation to prevent injury and continue their safe healing journey.

Caring for the residual limb at home

The part of the arm or leg that remains after surgery is often called the residual limb. Taking good care of this area each day helps lower the risk of infection and skin problems. Here are some general tips for residual limb care, however always follow your surgeon’s instructions if they differ:

Keep the skin clean and dry
Ask your doctor and therapist about scar mobilization to prevent adherent scars
Check the skin every day for redness, blisters, or spots that look irritated
Encourage your child to help check their limb so they can begin building healthy habits

Understanding phantom limb sensations and pain in children

Some children may notice sensations that feel like they are coming from the part of the arm or leg that is missing. This is called phantom limb sensation. Children may describe feelings such as tingling, warmth, itching, cramping, or movement in a hand or foot that is no longer there. This occurs less in children with amputations, but it can still happen.

Sometimes these sensations are painful. This is known as phantom limb pain. It is very real and can be upsetting, especially if a child does not understand why it is happening. Depending on your child’s phantom limb sensation or pain, your care team may suggest interventions such as gentle massage, desensitization therapies, mirror therapy, or other treatments.

Keeping a simple record of when phantom pain happens and what helps can be very useful. Sharing this information with your child’s care team allows them to better support your child.

Physical and occupational therapy: building strength, balance, and confidence

Physical and occupational therapy are often where many children begin to build strength, confidence, and independence. This can begin even before your child receives a prosthesis.

In physical therapy (PT), your child may:

Do gentle stretches to help protect joints
Build strength in their core and limbs
Work on balance
Learn to move using tools like a walker, crutches, wheelchair, or a prosthesis

In occupational therapy (OT), your child may:

Practice daily activities such as dressing, bathing, and using the bathroom in new ways
Learn how to use adaptive tools for tasks like writing or eating
Work on play skills and school-related activities

Many parents find it helpful to watch therapy sessions. This can make it easier to support exercises at home. Rather than trying to remember everything, ask the therapists to show you two or three key activities to practice between visits or provide a print out of exercises you can do at home. Your therapy team will work closely with your prosthetist team to ensure your child is successful with their rehabilitation and recovery goals.

Prosthesis Fitting

Once your child’s limb has healed and your physician has deemed it safe for them to wear a prosthesis, you will meet with a prosthetist team to begin the process of being measured for a prosthesis. This may take a number of visits, including evaluation appointments, casting sessions, and practice fittings before the prosthesis is ready to come home with your child. Your prosthetist will work with your family, the physician team, and the therapy team to ensure the prosthesis is appropriate for your child, and can help your child regain functional mobility and meet their goals. They may even join you at sessions of physical therapy to help adjust and optimize the prosthesis.

Your child’s prosthetic goals may change over time, especially as their limb changes and heals after surgery, and as they get stronger. Their activities and interests may change over time as they grow. A pediatric prosthetist will ensure that your child’s prosthesis can adapt and change to their growing body and changing needs. Your prosthetist will also ensure that the prosthesis is still fitting your child as they grow, and may replace parts or measure for a new prosthesis as your child grows and changes. It is important to regularly follow-up with your child’s prosthetist team so they can be successful and safe with their prosthesis.

Disclaimer:

OPSB products and products distributed by OrthoPediatrics Corp. should be used under the guidance of qualified healthcare professional. Individual results may vary. Please consult your pediatrician or orthopedic specialist for professional advice, including intended use, warnings, precautions, side effects and contraindications. This article is for informational purposes only and does not constitute medical advice. Always follow your doctor’s recommendations and instructions.

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