What is a congenital hand anomaly?
A congenital hand anomaly is a hand or arm deformity that is present at birth. The unborn baby develops the anomaly early during pregnancy. Some of the more common anomalies include:
- having more or fewer than five fingers
- fingers that will not bend or will not straighten
- fingers that are joined together
- bones in the hand or arm that are too short or missing
Congenital hand anomalies are sometimes diagnosed by ultrasound during pregnancy. But when they are not, they often come as a surprise to parents.
The cause of congenital hand anomalies is unknown
The cause of a congenital hand anomaly cannot usually be determined. In most cases, we do not know exactly why it happens. Sometimes a congenital hand anomaly is directly associated with a type of syndrome or is passed along through families. Sometimes it "just happens" without explanation.
Congenital hand anomalies are rare. The mother does not cause hand anomalies by something she did or did not do during pregnancy. Parents who have one child with a congenital hand anomaly will usually not have another.
Treatment options for a congenital hand anomaly
Children with congenital hand anomalies function extremely well, often without any intervention. Some children may function better with surgical correction, therapy, or simply with adaptations or changes to their environment.
If your child is doing everything they want to be doing and are keeping up with their friends, then treatment is not necessary. Your child’s needs will be re-evaluated as they grow and develop new interests.
The most important goal of any treatment is to help the child function as independently as possible. If your child is having difficulty doing the things they want to do because of a congenital hand anomaly, treatment options may be available. Talk to your doctor about your child’s issues.
Treatment is not always necessary
If your child is functioning well and is happy, treatment is not always necessary. The way your child does things may look different from the way you do them, but that does not mean it is wrong or should be changed.
It is important to remember that not all options are possible or necessary for every child. Different children with the exact same diagnosis will not necessarily have the same treatment. All factors of a child’s life are considered when deciding what to do. Often the child is the one who makes the decisions. An occupational therapist, in consultation with a plastic surgeon, will complete a functional hand evaluation to help you determine the best options for your child. The occupational therapist will engage your child in play activities to observe how your child grasps things and how they overall use their hands. Depending on the hand anatomy, your health-care team may suggest surgical or therapeutic solutions.
An occupational therapist can help teach your child different ways of doing things that will help them be as independent as possible. Your child may require a stretching or splinting program to help improve movement of their joints. Your child may perhaps benefit from special equipment or modifications to activities. The occupational therapist will look at the way your child does what they need to do and help make sure they are able to do everything they want to.
Depending on your child’s condition and level of involvement in sports or music, they may benefit from a custom-made prosthesis (artificial limb) to help with a particular activity. If this is the case, you will be referred to a prosthetic centre.
An adult who has lost a limb through injury or disease often needs or wants an artificial limb, but children born with missing limbs tend not to need or want artificial limbs in the same way. Children adapt to the way they were born. Adding an artificial limb is often bulky and awkward, and it does not provide sensory information or feedback from the environment. This means that adding an artificial limb usually does not improve the child’s range of activities.
You and your health-care team should consider surgery only if:
- It helps improve the way your child’s hand works.
- It changes the appearance of the hand without decreasing function.
Children as young as 6 to 12 months old may have surgery. But sometimes it is better to wait and see how your child will use their hand before making any decisions. In some cases, it is a good option to wait for your child to become old enough to be a part of the decision-making process.
Just because surgery is possible, does not mean it should be done. Ask yourself if having the surgery will help your child take part in more activities. Also, if the surgery aims to improve the appearance of the hand, it should not compromise the function of the hand.
An experienced occupational therapist and plastic surgeon can help you answer these questions. You do not have to decide right away.
Prepare your child to handle teasing
Children experience and cope with teasing in a wide variety of ways. It is usually best to be open and honest with your child about their hand difference and not try to hide it from others. Help your child to be ready for questions about their hand and help them prepare an answer when faced with questions. Children are simply curious and wonder what happened. A good answer is “I was born this way.” Children also like to be reassured that the hand deformity does not hurt and that the child can do everything they want to do. Often all it takes is letting others know why the hand looks the way it does. Once the other children see that your child can in fact do everything they can do, they no longer question things.
Bullies exist everywhere and will always find something to tease or bully about. A hand difference could be an easy target. In general, it is good to prepare your child to handle teasing. You cannot protect your child from teasing, but you can prepare your child with strategies for dealing with it. Many resources are available to help with this, such as:
For more information, visit PREVNet resources page.
Getting ready for school
Children with hand anomalies attend regular classrooms in regular schools and usually do not need any special assistance. Your child may be able to write and type on a keyboard. Depending on the type of hand anomaly, your child may type or hold a pencil differently than most children. This does not matter as long as your child is able to keep up with the demands of the classroom. If your child needs special assistance, discuss this with your child’s teacher and therapist if you have one.
What teachers need to know about a congenital hand anomaly
Your child's teacher may find the following information helpful.
Most students with a congenital hand anomaly will find their own way of doing things and adapt extremely well. With your assistance, some children will feel more comfortable starting off the school year by explaining to everyone why their hand looks different. Discuss with the child and their family and plan out so the child feels confident and comfortable.
Students may have a different way of holding pencils and other utensils, but as long as they are keeping up with the class and are comfortable, do not try to change the way they hold their pencil or their hand dominance. Students who cannot keep up with the demands of the classroom may require modifications to the program or adaptations to equipment, including sports equipment, musical instruments and writing implements. An occupational therapist can help determine and make appropriate adaptations.
Advocating for your child
A congenital hand anomaly does not hurt your child. Your child will be able to do just about everything they want to do, as long as you advocate for them. Help teachers and sports instructors know that the way your child does things may look different, and that they may or may not require modifications to the activity. Your child can participate in many activities.
Accepting your child
Babies do not realize anything is different about them and are not experiencing any pain or loss because of a congenital hand anomaly. As a parent, you may be feeling anger, guilt or shock. However, it is important to know that this is not your fault and there is nothing you could have done differently.
Whether or not your child accepts the way their hand is depends largely on whether you accept it. Many children grow up with significant hand anomalies without any emotional impact. Others struggle with acceptance, especially as teenagers. If you or your child are struggling, support networks and social workers are available.
Support for you and your child
An occupational therapist can help determine your child’s quality of hand function and if they would benefit from any therapeutic intervention. Ask your family doctor for a referral.
If you are struggling with accepting your child’s diagnosis or with having to make a decision about surgery, a social worker may be able to help you.
There are a number of support networks online, including the War Amps Program (CHAMPS).
- Children with congenital hand anomalies can usually do anything they want to. Encourage them to participate in a variety of activities.
- A simple modification to a musical instrument or sports equipment may be all it takes to help your child participate in a chosen activity.
- In some cases surgery will help improve your child’s hand function or appearance. In many cases, treatment is not necessary.
- An occupational therapist and plastic surgeon can help you decide on treatment options.
- Children are much more likely to accept their hands the way they are if you do.