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Cleft Hand

  • "Our chief surgical goals with cleft hand are to close the cleft, optimize the thumb's function to preserve or enhance grasping, pinching and releasing movements, and improve the hand's appearance."
    –Peter M. Waters, MD, Chief, Orthopedic Center; director, Hand & Orthopedic Upper Extremity Program; director, Brachial Plexus Program, Boston Children's Hospital

    cleft hand

    At Boston Children's Hospital, we understand how concerned you are if your baby was born with a hand deformity called cleft hand. Our Orthopedic Center’s Hand and Orthopedic Upper Extremity Program will approach your child’s condition with care and support—for your child and your whole family.

    • A diagnosis of cleft hand means that your child’s hand is missing finger(s) and may have other deformities, some of which can be classified by type. (
    • Clefts are always central (middle finger[s]) and are usually V-shaped.
    • But they can also be on the thumb (radial) side, less commonly little (ulnar) finger side, or in various combinations.
    • Cleft hands usually occur on both hands (bilateral).
    • But they can also be unilateral, and can include one or both feet.
    • The condition is present and visible at birth (congenital).
    • 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 strong chance of having it, too. In cleft hand, that chance is 50 percent.
    • A cleft hand can also occur in isolation, or as part of a genetic syndrome.
    • The condition affects between one in 10,000 and one in 90,000 babies.
    • All affected children, except those with very mild cases, need one or more surgeries, usually starting in their first year of life.
    • Surgery’s first goal is to improve hand function (the ability to grasp, pinch, and let go of objects); this requires the surgeon’s careful attention to the thumb.
    • The second goal is to improve the hand’s appearance.
    • Surgery usually is performed in the child’s first or second year of life.
    • When planning surgery, the surgeon must reconstruct not just the bones of the hand, but also the soft tissues, such as ligaments and nerves.

    How Boston Children's Hospital approaches cleft hand

    You can have peace of mind knowing that the skilled experts in our Orthopedic Center’s Hand and Orthopedic Upper Extremity Program have treated thousands of babies and children with cleft hand and many other hand problems. We provide expert diagnosis, treatment and care, and we benefit from our advanced clinical and scientific research.

    Our Orthopedic Center—one of the first of its kind in the nation—is nationally known as a premiere center for orthopedic care of children and young adults with developmental, congenital, neuromuscular, sports related, traumatic and post-traumatic musculoskeletal problems.

    Cleft hand: Reviewed by Peter M. Waters, MD
    © Boston Children's Hospital, 2012

    Hand and Orthopedic Upper Extremity Program

    The Hand and Orthopedic Upper Extremity Program provides comprehensive care involving occupational and physical therapy, splinting, casting and reconstructive surgeries for infants, children and adolescents with complex congenital, neuromuscular, sports-related oncologic and traumatic upper limb conditions. 

    Hand and Reconstructive Microsurgery Program

     The specialists in the Hand and Reconstructive Microsurgery Program at Boston Children's are experts in the management of congenital and acquired hand deformities. We recognize the social elements involved in pediatric hand surgery, so an essential part of these operations has been making the child's hand as symmetrical as possible with his unaffected hand.

  • At Boston Children's Hospital our orthopedic experts 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

    What is 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.

    What causes cleft hand?

    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).

    How common is cleft hand?

    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.

    How will having a cleft hand affect my child?

    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.

    Does cleft hand cause my baby pain?

    No. Typically, a child doesn’t experience pain as a result of cleft hand.

    What are the signs and symptoms 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.

    How is a cleft hand diagnosed?

    Cleft hand develops between the 28th and 56th day of fetal development, when the bones of the hand are forming. The condition can sometimes be detected on a routine prenatal ultrasound. After the baby is born, the deformity is visible.

    Details of the diagnosis are usually confirmed through a physical exam and x-rays. Your child’s doctor will closely evaluate every anatomic structure of the hand, determining what is present or absent, normal or abnormal. The doctor will take particular care to assess the soft tissue specifics of the hand, such as muscles, ligaments, blood vessels and nerves.

    In diagnosing the condition, your child’s doctor will likely classify it as one of five types—with Type 1 the mildest and Type 5 the most severe.

    Can cleft hand be associated with other conditions?

    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:

    How is cleft hand treated, and at what age?

    In all but mild cases of cleft hand, the condition is treated surgically, usually when a child is 1 to 2 years old. There are several surgical approaches that surgeons can take, but all surgeries aim to:

    • increase hand function by reconstructing the thumb and first web space (the area between the thumb and index finger)
    • decrease the deformity by closing the cleft

    Will my child be OK? What’s her long-term outlook?

    Your child’s future outlook depends on the severity of her condition, as well as that of any associated conditions she may have.

    Causes

    There’s a clear genetic basis for typical cleft hands. Inheritance of cleft hand is autosomal dominant: If a parent has the condition, the child has a 70 percent chance of having it, too. The condition can occur by itself (in isolation), or as part of a genetic syndrome, such as ectrodactyly (split hand-split foot malformation) or cleft lip and palate.

    Signs and symptoms

    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 cleft combinations.

    When to see a specialist

    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.

    Questions to ask your doctor

    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?

    Complications

    As the child grows, some gaps and deformities that were reconstructed by original surgery can recur. In these cases, additional surgery or surgeries may be needed.

    Long-term outlook

    Your child’s outlook depends on how severe her cleft hand is, as well as the extent of any associated conditions.

    The quality of the reconstruction of your child’s thumb and digits depends on the severity of her original malformation. You can expect that she will have active, functional grasp, pinch and release, and an improvement in the aesthetics of her hand. Alignment of her fingers should improve.

    For parents

    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.

    Cleft hand glossary

    • 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 index finger
    • 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 as possible
    • 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
  • Tests

    At Boston Children's Hospital, we understand that the first step to treating your child is obtaining an accurate, timely and thorough diagnosis.

    Cleft hand develops between the 28th and 56th day of fetal development—when the bones of the hand are forming. The condition can sometimes be detected on a routine prenatal ultrasound. After the baby is born, the deformity is visible.cleft hand

    Details of the diagnosis are usually confirmed through a physical exam and x-rays. Your child’s doctor will closely evaluate every anatomic structure of your child’s hand, determining what is present or absent, normal or abnormal. The doctor will take particular care to assess the specifics of the soft tissue of your child’s hands, including ligaments, blood vessels, nerves and muscles.

    If your child is diagnosed with a cleft hand, her doctor will check for other associated deformities or syndromes, including:

    • cleft lip and palate
    • ectrodactyly (split hand-split foot malformation)
    • foot abnormalities
    • encephalocele (protrusion of brain membrane)
    • conditions affecting the heart and digestive systems
    • (rarely)deafness

    Types of cleft hand

    In diagnosing the condition, your child’s doctor will likely classify it as one of five types, based on an assessment of the first web space (the space between the thumb and index ray)—from Type I (least severe) to Type V (most severe).

    Type Description

     

    I Normal first web space  
    IIA Mildly narrowed first web space  
    IIB Severely narrowed first web space  
    III Syndactylized thumb and index rays and first web space
    IV Merged first web space and cleft, index ray suppressed
    V Absent web, thumb suppressed, ulnar rays present  
  • At Boston Children's Hospital, experts in our Orthopedic Center's Hand and Orthopedic Upper Extremity Program provides comprehensive care—including evaluation, diagnosis, consultation, surgery, non-surgical therapies and follow-up care.

    Whether to do surgery

    Not all children need surgery for a cleft hand—it may not be necessary if your child has good use of her hand and the deformity is not too severe. However, if your child's hand has significant functional or cosmetic problems, her doctor may recommend surgery.

    cleft hand

    When to do surgery

    Surgeons will perform surgery early in a child's life if the cleft hand's deformities are progressive (will worsen over time)—such as syndactyly (joining) between the thumb and index finger, or transverse bones between the digits. If the cleft hand doesn't have progressive deformities, surgery can take place when the child is 1 or 2 years old.

    Goals of surgery

    If surgery is needed to repair cleft hand, there are many different surgical approaches available. The timing and sequence of procedures will vary from child to child, but in general, the first procedure is usually done when, or after, a child is 1 year old.

    In general, the goals of surgery are:

    • close the cleft and make sure your child can use his hand effective
    • create a good working space between his thumb and index finger to allow for pinch and fine motor function
    • reorganize the skin and soft tissue
    • stabilize or transfer the bones of the hand
    • correct any deformities of the fingers or thumb

    Caring for your child after surgery and into childhood

    For about four to six weeks after surgery, your baby will be in a long-arm cast stabilized by pins. After this time, her doctor can removed the cast and pins in the office setting without sedation.

    For several weeks, your child will wear a splint to bed to maintain alignment and help with scar reduction. She'll receive occupational therapy until she achieves supple active motion and developmentally appropriate use of her hand, during which time her doctor will monitor her progress monthly. The doctor will then follow her yearly until she stops growing (reaches skeletal maturity).

    Long-term outlook

    The quality of the reconstruction of your child's thumb and digits depends to a large extent on how severe her original malformation was. As a result of surgery, you can expect that she will have active, functional grasp, pinch and release, and an improvement in the aesthetics of her hand. The alignment of her fingers should also improve.

    As your child grows, some gaps and deformities that were reconstructed by her original surgery can recur. In these cases, additional procedures may be needed.

    Coping and support

    At Boston Children's Hospital, we understand that a hospital visit can be difficult, and sometimes overwhelming. So, we offer many amenities to make your child's—and your own—hospital experience as pleasant as possible. Visit The Center for Families for all you need to know about:

    • getting to Boston Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    In particular, we understand that you may have a lot of questions when your child is diagnosed with cleft hand. Will this affect my child long term? Will she be able to enjoy regular activities? Children's can connect you with extensive resources to help you and your family through this stressful time, including:

    • patient education: From doctor's appointments to physical therapy and recovery, our nurses and physical therapists will be on hand to walk you through your child's treatment and help answer any questions you may have—Why will my child need surgery? Are there non-surgical options? How long will her recovery take? How should we manage home exercises and physical therapy? We'll help you coordinate and continue the care and support your child received while at Boston Children's.
    • parent-to-parent: Want to talk with someone whose child has been treated for cleft hand? We can often put you in touch with other families who've been through the same process that you and your child are facing, and who will share their experiences.  
    • faith-based support: If you're in need of spiritual support, we'll connect you with the Boston Children's chaplaincy. Our program includes nearly a dozen clergy—representing Protestant, Jewish, Muslim, Roman Catholic and other faith traditions—who will listen to you, pray with you and help you observe your own faith practices during your hospital experience.  
    • social work: Our social workers and mental health clinicians have helped many families in your situation. We can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping with illness and dealing with financial difficulties.

    The Experience Journal

    Designed by Boston Children's psychiatrist-in-chief David DeMaso, MD, and members of his team, the Experience Journal is an online collection of thoughts, reflections and advice from kids, parents and other caregivers about a variety of medical experiences, including hip problems.

    Boston Children's Teen Advisory Committee

    To help teenagers take a more proactive role in their treatment and to have their needs recognized, Boston Children's developed the Teen Advisory Committee. The group—made up of current Children's patients, ages 14 to 21—serves as a team of peers who can listen to other patients' needs, ensure their voices are heard and advocate for change. 

  • Improving outcomes for upper extremity disorders

    The Orthopedic Center's Hand and Orthopedic Upper Extremity Program is dedicated to the comprehensive care of all upper limb conditions in infants, children and adolescents. Under the direction of Peter M. Waters, MD and Donald S. Bae, MD, patients with congenital, neuromuscular, sports-related, oncologic and traumatic or post-traumatic conditions of the upper extremity receive multi-disciplinary care that includes occupational and physical therapy, splinting/casting and reconstructive surgery.

    In addition, our Hand and Orthopedic Upper Extremity Program is committed in its efforts to improve clinical care through continued clinical and basic science research. The program is studying the treatment of a wide variety of upper limb conditions, including:

    • reconstruction of the congenitally deficient hand
    • the use of microsurgical techniques in reconstructive surgery for congenital upper extremity differences
    • instability of the sternoclavicular and glenohumeral joints of the shoulder
    • post-traumatic stiffness and deformity of the elbow
    • surgical correction of forearm deformity following previous fracture
    • ligament and/or cartilage injuries of the wrist
    • the use of microsurgical techniques in reconstructive surgery following limb salvage for bone and soft-tissue tumors

    Many of these investigations have resulted in national and international presentations or peer-reviewed medical publications—and all have increased our ability to provide the highest standard of care.

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