Bone, Joint and Muscle Conditions
Congenital Hand Disorders
What are congenital hand disorders?
Having extra fingers and having joined fingers are common congenital hand disorders.
When a baby is born with a hand that isn’t typical, doctors call the condition a congenital hand disorder or congenital hand difference. “Congenital” means “present at birth.”
For some reason, the baby’s hand didn’t form the usual way while they were in the womb. Their hand may look only a little different than usual, and it may work normally or nearly normally. Or it may be quite different from a usual hand, with extra or missing fingers or other differences. In order to use the hand well, the child may need surgery, occupational therapy, a prosthetic device or other treatments.
Congenital hand disorders in children
Two of the most common congenital hand disorders are polydactyly (extra fingers) and syndactyly (joined fingers). Most children with these conditions have no other health problems.
Some hand differences are part of a more complex condition:
Parents often wonder why their baby’s hand isn't typical. Most often healthcare providers cannot tell what caused a congenital hand disorder. These hand differences are rarely caused by something the mother did or didn’t do while she was pregnant.
Congenital Hand Disorders at Seattle Children’s
The Seattle Children’s Hand and Upper Extremity Program treats children with congenital hand disorders. Each year we see many babies with these conditions in our clinics. Our doctors, surgeons, occupational therapists, nurses and many other healthcare providers work as a team. We create a treatment plan tailored to your child. Our goal is to get the best results possible.
For many of our patients, treatment means surgery – sometimes highly complex surgery, such as microvascular surgery . We have a lot of experience doing these surgeries in children.
As we learn what your child and family need, we connect you with other team members, such as social workers and nutritionists. When needed, our Rehabilitation Program provides occupational therapy to help children with congenital hand disorders gain the best use of their hands.
We see your child as a whole person. Infants, children and teens are still developing, so they may need different care than adults do, like treatment that takes their growth plates into account. Here, your child’s team has special training in the medical, surgical, emotional and social needs of young people.
Complex conditions that affect your child’s bones, muscles and joints may affect other parts of their body too, from their nerves or lungs to their bladder. We connect you with the many types of Seattle Children’s experts your child needs – on the same day, in the same clinic whenever we can.
Our Hand and Upper Extremity Program is part of the Orthopedics and Sports Medicine Program.
Your child will be cared for by an experienced team that may include:
- Pediatric orthopedic surgeons
- Nurse practitioners
- Physician assistants
- Athletic trainers
- Certified medical assistants
- Registered orthopedic technologists
- Sports physical therapists
We have the largest group of board-certified pediatric radiologists in the Northwest. Our radiologists have special expertise using ultrasound to look for bone and joint changes so we can work with your child to help prevent future problems. If your child needs imaging that uses radiation, we use the lowest amount possible to produce the best image. We also have a 3D low-dose radiation X-ray machine, called the EOS, for safer full-body 3D images.
Symptoms of Congenital Hand Disorders
Symptoms of congenital hand disorders may range from mild to serious. They may include:
- Extra, missing, short or joined fingers.
- Hands that are not as developed as usual or are not the usual size.
- Hands that are not in the usual position or cannot move in the usual ways.
- For some children, a hand difference is only 1 feature of a more complex genetic condition or syndrome. These children will have other signs and symptoms.
Diagnosing Congenital Hand Disorders
If your child is born with a congenital hand disorder, the doctor will examine them carefully. During the exam, the doctor will check for other signs to tell whether your child has a more complex condition.
Your child may need an X-ray to see if there are differences in the bones in their hand. To help diagnose your child’s condition, they may need other imaging studies, such as an MRI (magnetic resonance imaging) scan.
If the doctor thinks your child might have other genetic problems, your child might have tests to check their chromosomes.
Treatment Options for Congenital Hand Disorders
Congenital hand disorders can vary widely, so there’s no single treatment approach. Each child’s treatment must be tailored to them.
The main goal of treatment is to give your child the best possible use of their hand. Your child’s team will also pay attention to how your child’s hand looks and whether they can give it a more typical appearance.
For most children, treatment for congenital hand disorders involves 1 or more of the following:
- Surgery to remove extra digits, divide joined digits or reconstruct missing parts of the hand
- Occupational therapy to help with stiffness or scarring and improve a child’s skills, such as writing and feeding themselves
- Physical therapy to build strength and improve movement and function
- Splinting and casting to hold the hand in 1 position, often while it heals after surgery
- Adaptive devices to help your child do what they want and need to do with their hands
- Prosthetics to replace missing parts
Your child’s team can explain all your child’s treatment options, which options the team recommends and why.
Some hand differences need treatment in the early months or years after birth, and then they don’t need any other treatment later. Other differences may need more treatment as your child grows. Ask your child’s team about the short-term plan, the long-term plan and what to expect.
If you have questions about congenital hand disorders, call our Orthopedics and Sports Medicine Department at 206-987-2109. If you would like an appointment, ask your child’s primary care provider for a referral.
Providers, see how to refer a patient (PDF).