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Cleft Hand

In cleft hand, there is a central V-shaped gap or cleft in the hand. One or more digits may be absent, but the small finger is always present. There is an extremely wide variety of presentations. Usually both hands and both feet area affected. Often, despite an unusual appearance, these children demonstrate quite good hand function. Cleft hand is a rare congenital hand anomaly. This condition has been known by several other names, such as ectrodactyly, split hand, and lobster claw hand. These terms have now been largely abandoned in favor of “cleft hand.”

Is this condition painful?

No, typically there is no pain associated with this condition.

What are the different types of cleft hand?

The presentation of cleft hand may vary from a simple central gap in the hand to an absence of all the digits except the small finger. Like many of the congenital anomalies, there is a spectrum of deformity with cleft hand.

Who gets cleft hand?

Cleft hand is inherited as an autosomal dominant condition. This means that there is a 50% chance of cleft hand occurring in the children of an affected individual. The condition may arise as a new genetic mutation, in which case the parents are not affected.

What causes cleft hand?

The exact cause of cleft hand is not currently known.

What are the main issues related to cleft hand?

The primary issue in cleft hand is function of the hand and digits; appearance of the hand is also an issue, but is secondary to function. Some of these children with very mild involvement will have almost no functional limitation, while others may have significant functional limitations (e.g. when there is only a small finger present).

Are there other problems that occur commonly with cleft hand?

A number of other anomalies have been observed in association with cleft hand. Some of these include cleft lip and palate, congenital heart disease, anomalies of the anus, anomalies of the eyes, and deafness. In addition, other bone and joint anomalies in the upper and lower limbs may be present. Therefore, it is critical that all babies with cleft hand be carefully and thoroughly examined by an experienced pediatrician.

What is the treatment for babies with cleft hand?

While every patient is treated individually, with treatment plans made specifically for him or her, some generalizations are possible. The primary goals in surgical treatment of cleft hand are to close the cleft or gap in the hand, to reconstruct a functional thumb and first web space (the space between the normal thumb and index finger), and to enable pinch and grasp. Many different surgical procedures may be used, depending upon the specifics of each patient. The timing and sequence of procedures is unique for each patient. In general, however, the first procedure is usually done at or after one year of age.

What is done between the time my baby is born and the first surgery?

You will meet with your surgeon soon after your baby is born. In some cases, the diagnosis is made prenatally by ultrasound exam, and you may have the opportunity to meet your surgeon before your baby is born. Your surgeon will examine your baby and take xrays of the affected hand. Your baby will be examined in the clinic periodically during the months before surgery. The treatment plan and the details of the surgical procedures will be carefully explained to you by your surgeon.

What sorts of specialists will be involved in my baby’s care?

At the very least, your child will be treated by the hand surgeon, a certified hand therapist, a pediatrician, and a geneticist. Additional pediatric specialists may be involved if other abnormalities are detected.

Will we get to know our surgeon?

Ideally, you will meet your surgeon either prenatally or soon after your baby is born. You will meet with your surgeon several times before surgery, and will get to know him quite well. Many children with cleft hand require multiple surgeries, and the family and surgeon often work together for quite some time.

Our Team

  • Lynette Baker, RN, CPSN, BSN
    Lynette Baker, RN, CPSN, BSN
    • Nurse Clinician
  • Cathy Barrow,CHT
    Cathy Barrow, CHT
    • Hand Therapist
  • Brad Earnest,CHT
    Brad Earnest, CHT
    • Hand Therapist
  • Mark Simenson,CHT
    Mark Simenson, CHT
    • Hand Therapist

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Contact Us

If you have questions or concerns, feel free to contact our pediatric plastic surgery nurse at 573-882-4176.