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There are many ways you can help children and their families get the care they need.
At Boston Children's Hospital our skilled experts in our Orthopedic Center's Hand and Orthopedic Upper Extremity Program know that it’s distressing to learn that your baby has a cleft hand. We’ve pioneered innovative surgical treatments for children with all types and variations of cleft hand.
Cleft hand is a rare congenital (meaning your baby was born with it) birth defect in which the hand didn’t develop properly during fetal development. This causes the affected hand to have missing fingers, a V-shaped cleft and other deformities.
There’s a clear genetic basis for typical cleft hands. Inheritance of cleft hand is autosomal dominant: This means that if a parent has the condition, the child has a 50 percent chance of having it, too.
Cleft hand can occur in isolation or as part of a genetic syndrome, such as cleft lip and palate or ectrodactyly (split hand-split foot malformation).
Cleft hand is very rare. It affects between one in 10,000 and one in 90,000 babies. An isolated cleft hand (in which there’s no associated clinical syndrome or systemic illness) accounts for fewer than 5 percent of all congenital hand conditions.
It really depends on the severity of the problem, and the severity of the problem is usually tied to how much or little function your child’s hand has. Some children can grasp, pinch and release with just a mild degree of cleft hand, while others experience an extreme lack of hand function.
No. Typically, a child doesn’t experience pain as a result of cleft hand.
In a cleft hand, there are always clefts in the central (middle fingers) part of the hand, and they’re usually V-shaped. However, clefts can also occur on the thumb (radial) side of the hand, or, less commonly, on the little (ulnar) finger side. They can also occur in various combinations.
In the majority of children who have it, a cleft hand may be an isolated occurrence, affecting only her hand. But your doctor will check for other associated deformities or syndromes, including:
• cleft lip and palate
• foot abnormalities
• encephalocele (protrusion of brain membrane)
• conditions affecting the heart and digestive systems
• (rarely) deafness
Signs of cleft hand are visible at birth, and increasingly, on prenatal ultrasound.
• The baby’s hand has missing fingers, a V-shaped cleft and other deformities.
• There is always a central (middle fingers) cleft.
• But there can also be radial (thumb side) cleft, an ulnar (little finger side) cleft, or various
If a fetal ultrasound reveals that your baby has a cleft hand, you’ll be referred to a hand specialist, who will help you plan for your child’s care after she’s born. If you haven’t learned during your pregnancy that your child has a hand problem, the cleft hand will be visible when your baby is born, and you will be referred to a hand specialist.
Lots of parents find it helpful to write down questions as they occur to them before their appointment—that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.
Some questions you could ask are:
• Why did my child develop a cleft hand? (You would ask this if neither your partner nor you
have a cleft hand.)
• What will x-rays reveal beyond what is visible to the eye?
• What are the associated conditions, if any, with a cleft hand?
• Is surgery necessary, and if so, what does it entail? Are there alternative therapies?
• Will my child be OK after surgery? Could there be complications?
• Will my child recover full function of her hand? Will it look OK?
• Will there be restrictions on her activities or capabilities?
• Will my child need physical therapy?
• What will be the long-term effects?
• What can we do at home?
If your baby was born with a cleft hand—or if you’re expecting a child who will have a cleft hand—you’re probably disappointed that your child and your family are facing a complicated path so early in her life. If you feel frustrated or depressed, speak to your doctor or counselor to get help. Professionals in Boston Children’s Center for Families can provide you with important resources and referrals.
• autosomal dominant: genetically predisposed to have the same trait as a parent; in the case of cleft hand, if a
parent has the condition the child has a 70 percent chance of having it, as well.
• cleft hand: hand is missing fingers (cleft) and has highly variable deformities. Clefts are always central (middle
fingers) and are usually V-shaped; they can also be radial (thumb side), ulnar (little finger side), or in
combinations of these.
• congenital: present at birth
• embryonic development: development of the fetus in the womb
• (first) web space: the space between digits; the first web space is the space between the thumb and
• in isolation: a condition that occurs “by itself,” rather than as part of a larger syndrome
• in utero: in the womb (uterus)
• occupational and physical therapy: services offered by trained professionals to help restore function or
(re)teach basic life skills, like dressing oneself or grasping objects
• orthopedics: the medical specialty concerned with diagnosing, treating, rehabilitating and preventing disorders
and injuries to the spine, skeletal system and associated muscles, joints and ligaments
• orthopedic surgeon, orthopedist: a physician specializing in surgical and non-surgical treatment of the spine,
skeletal system and associated muscles, joins and ligaments
• post-operative (post-op): occurring after surgery
• prenatal (fetal) ultrasound: ultrasound performed at several stages of pregnancy; can detect radial club
hand in the fetus
• pre-operative (pre-op): occurring before surgery
• radial club hand: a deformity in which the forearm doesn’t develop properly, causing the hand to be bent
inward toward the thumb with limited movement
• radius: forearm bone on the inner (thumb) side
• range of motion (ROM) exercises:physical therapy exercises designed to improve or restore flexion and
extension of joints
• reconstructive surgery: surgery performed to repair and/or restore a body part to normal or as near normal
• sporadic: occurring without apparent cause
• syndactyly: digits partially or completely united
• ulna: forearm bone on the outer (little finger) side
• x-rays: a diagnostic test that uses invisible electromagnetic energy beams to produce images of internal tissues,
bones, and organs onto film
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”