Emily’s parents sat in Dr. Laurel Benson’s office with faces creased with worry and an occasional tear, “how will she fit in? I’m so worried she’s going to be teased.”

Emily was born with a left arm that ended just below the elbow without fingers. “Should we get a hand transplant? Should we get a prosthesis? How did this happen?” Yet through this worry their vision of Emily was that she was perfect. What could they do to help her see that?

What is symbrachydactyly?

  • Sym – together
  • Brachy – short
  • Dactyl – fingers

Symbrachydactyly is a congenital abnormality of the hand or, occasionally the foot. In most cases the elbow joint is typical with the normal structures ending at the forearm, wrist or hand level.

In most cases, children born with symbrachydactyly are able to adapt to their physical limitations and experience a fully functional life.

Bones can be missing from the fingers and some fingers may be missing altogether. The fingers may be small and webbed together or may be “nubbins” of tissue with tiny residual nails but without bone support. Although the fingers may lack motion, sensation remains intact and the child has a normal ability to protect them from harm.

Is symbrachydactyly common?

Symbrachydactyly has been reported to appear without other combined limb anomalies and usually in one arm. Some studies report an incidence of 1 in 30,000 births while other studies report an incidence of 1 in 10,000 births.

What causes symbrachdactyly?

The cause of symbrachydactyly is unknown. One possible cause might be an interruption of the blood supply to the developing arm at four to six weeks of pregnancy. There is no link to anything the mother did or did not do during pregnancy. There is also no increased risk of having another child with the same condition or that the child will pass the condition on to his or her children.

How is symbrachydactyly diagnosed?

Occasionally symbrachydacyly is diagnosed on a prenatal ultrasound but more commonly it is a finding seen on the birth exam. Because the structures of the wrist and hand are cartilage at birth, x-rays may not be indicated until 1 year of age to fully evaluate the missing elements.

How is symbrachydactyly treated?

For most children no treatment is required. Those with webbed fingers may benefit from a web space reconstruction. Hand transplants have not been used for this condition because the powerful drugs that limit rejection of the transplanted tissue have massive effects on a growing child and might even make them more at risk for developing cancers.

Other surgical options include toe transfers or lengthening of the short fingers. In general, these procedures are appropriate for very few patients.

Most children with symbrachydactyly have excellent function in daily activities. Historically children have been burdened with prostheses at very early ages in hopes of improving function. We now know that the vast majority of these prostheses were abandoned in a closet while the child played unfettered. However, some adaptive prosthetics and equipment for sports and leisure activities may be helpful when the child is older.

What is the long-term outlook for my child?

A study conducted by the Shriners Hospital system revealed that children with symbrachydactyly tend to be happier and more content with their bodies than children with two typical hands. Although the exact cause for this statistic is subject to interpretation, most physicians believe that the parents’ role in praising the child for his or her accomplishments plays a key component in helping the child accept differences not only in himself but also in others.

In most cases, children born with symbrachydactyly are able to adapt to their physical limitations and experience a fully functional life.

18 years later in a routine follow-up visit, Emily and her parents were excited to tell about her softball scholarship to college where she was going to study journalism. Emily was known in her school for her sense of humor and her kind disposition. Her parents reflected back on that very first visit and their worries that had evaporated throughout the years.