Cleft Hand (Ectrodactyly)

Cleft hand is a rare condition that affects how the hand forms during early pregnancy. A child may be born missing fingers or have a deep V-shaped split in the middle of the hand.

If your child has cleft hand, you likely have questions about what it means and what comes next. At Banner Children’s, we’re here to help you understand the condition and explore treatment options. Our team provides expert care to help your child build strength, function and confidence.

What is cleft hand?

Cleft hand is a congenital hand difference that happens when the center of the hand doesn’t fully develop during pregnancy. “Congenital” means the condition is present at birth.

Some children have cleft hand on one side (unilateral), and others have it on both sides (bilateral). In rare cases, cleft hand can also affect the feet.

Cleft hand is also called split hand, ectrodactyly or central deficiency. “Lobster-claw deformity” is an outdated term that is no longer preferred.

How common is cleft hand?

Cleft hand is very rare. It happens in about 1 in every 90,000 to 150,000 live births. It can affect boys and girls of any race or background.

Types of cleft hand

There are two main types of cleft hand:

• Typical cleft hand (central deficiency): This usually affects the middle of the hand, with a deep split where the middle fingers would be. Typical cleft hand may occur in one or both hands.
• Atypical cleft hand (symbrachydactyly variant): This type is less common and usually affects one hand. The cleft may not be in the center and can look different in each child. Fingers may be shorter, missing or joined together, resulting in a more U-shaped appearance. 

What causes cleft hand?

Cleft hand happens when something changes the way a baby’s hands form while they are growing in the womb. The cause is not always known but it can be linked to:

• Genetics: Some children inherit the condition from a parent. It may be passed down through a dominant gene, which means only one parent needs to carry the gene for a child to be affected.
• Syndromes: Cleft hand can be part of a genetic syndrome. These include:
  • Split hand/foot malformation (SHFM)
  • EEC syndrome (ectrodactyly-ectodermal dysplasia-cleft lip/palate)
  • Adams-Oliver syndrome
  • Amniotic band syndrome
• Environmental factors: In rare cases, things like exposure to harmful substances during pregnancy may play a role. This may include drinking alcohol, smoking, vaping, illegal drugs and certain medications.

Signs and symptoms of cleft hand

Cleft hand may affect one or both hands and is usually visible at birth. It often involves missing or fused fingers and a split in the center of the hand. In some cases, the feet may also be affected.

Signs and symptoms may include:

• A deep split or gap in the center of the hand
• Fewer than five fingers
• Fingers that are joined together (syndactyly)
• Misshapen, underdeveloped or stiff fingers and joints
• Trouble grasping or holding objects
• Differences in how the hand looks or moves

How is cleft hand diagnosed?

Cleft hand can sometimes be seen on a prenatal ultrasound before birth. Other times, it’s diagnosed when the baby is born.

After birth, your child’s health care team may recommend:

• Physical exam: To check the hand’s structure and function
• X-rays: To see the bones and joints
• Blood tests and genetic tests: To check for other health conditions or inherited traits

Your child may also see a specialist, such as a pediatric orthopedic surgeon, a hand surgeon or a geneticist. 

Treatment of cleft hand

Treatment for cleft hand depends on your child’s needs. Some children need surgery or therapy, while others benefit from procedures or support to improve hand function and appearance. 

Surgery

Surgery can help improve both the function and appearance of the hand. The goal is to create a  strong, usable space between the thumb and index finger (first finger) to allow your child to pinch and grasp. 

Most children have surgery between 6 and 12 months old, but timing depends on your child’s development. Some children may need more than one surgery.

Surgery may be recommended if your child has:

• Trouble using their hand
• Unstable bones or joints
• Fused or stiff fingers 
• A wide cleft that affects movement

The surgeon may:

• Close the cleft to bring fingers closer together
• Separate fused fingers
• Reconstruct bones, joints, tendons or muscles
• Add skin grafts (extra skin) or soft tissues to improve shape

Therapy

After surgery, or even without it, therapy can help your child build strength, improve movement and develop new skills. A physical therapist or occupational therapist may work with your child on:

• Stretching and strengthening exercises
• Hand coordination and fine motor skills
• Adaptive tools to help with daily tasks
• Play-based activities that encourage hand use

Emotional support

Living with a visible difference can be challenging for some children, especially as they grow older. Emotional support can help your child feel confident and proud of who they are.

Helpful resources may include:

• Support groups for children and families
• Counseling or play therapy
• Tips for talking with classmates, teachers and friends

What’s the outlook for cleft hand?

Most children do well after surgery and treatment but every child is different. Some children with cleft hand have nearly full function, while others may need help with certain tasks like writing or getting dressed. The goal of treatment is to give your child the best use of their hand and help them feel good about how they look and what they can do.

With care, support and love, your child can grow up to enjoy school, sports, hobbies and friendships just like any other child. 

Why choose Banner Children’s for cleft hand care?

At Banner Children’s, we understand the challenges that come with congenital hand differences like cleft hand. Our care team offers complete, family-centered care. We work closely with you to understand your goals and support your child at every stage of life.

We offer:

• Expert, family-centered care from diagnosis through recovery
• Advanced tools and techniques to support better outcomes 
• Support services for the entire family

Whether your child needs surgery, therapy or regular monitoring, we’re here to help them grow strong and confident. 

You’re not alone

Many families have faced this same challenge. With care and support, your child can grow strong and healthy. We are here to support you with answers, options and expert care.

Find a Banner Children's specialist near you and schedule an appointment today.