Radial club hand

At Children’s Hospital Boston, experts in our Orthopedic Center’s Hand and Orthopedic Upper Extremity Program and our Plastic Surgery Department’s Hand and Microsurgery Reconstructive Program provide comprehensive care—including evaluation, diagnosis, consultation, surgery, non-surgical therapies and follow-up care.

The goals of treatment are to:

• correct the radial deviation of the wrist
• balance the wrist on the forearm
• maintain wrist and finger mobility
• maximize hand function
• preserve forearm growth
• improve appearance

Exercises and splinting 

During infancy, the goal of treatment is to allow your child’s wrist to extend and her elbow to move into a normal position. Your child's doctor will guide you in performing stretching exercises for your child’s wrist and elbow at home to help accomplish this goal. More severe cases may require casting or splinting to gradually stretch the contracted soft tissues.

Once passive motion (motion guided by a helper) is achieved, your baby will likely need to wear a splint during the night throughout her infancy and during periods of rapid growth. Even if your child needs surgery, keep in mind that the range-of-motion exercises are extremely important.

Any improvement in range of motion achieved through exercise will make subsequent surgery more effective and perhaps less complex.

The decision of whether to operate

Treatment for radial dysplasia can be complex. Surgical treatment is usually needed to any correct deviation of the wrist that persists after stretching and splinting. But doctors also must weigh the decision to perform surgery against any other problems that your child may be experiencing due to other associated deformities or syndromes, including those of the:

• heart (such as Holt-Oram syndrome, also called hand-heart syndrome)
• kidneys, spinal column and/or digestive system (such as VACTERL syndrome)
• blood cells (such as Fanconi anemia)

Also, if your child cannot flex her elbow, a bent wrist and short forearm can sometimes be an advantage, enabling your child to do things such as feed herself.

Surgery

Surgical treatment is often separated into several phases—with a specific surgical procedure to treat each area of the arm and hand that’s affected by the radial dysplasia. Treatments may begin in the first year of life, and may take place over the course of months or years.

Treatment options for the wrist

Your child’s doctor may recommend:

• pre-surgical lengthening
  • used prior to surgery to gently stretch your child’s hand into a straighter position
  • recommended in infancy in situations in which it’s very difficult to stretch out the tight wrist
  • used in adolescence when there is recurrent deformity or marked shortening of the forearm
• centralization surgery
  • indicated for the more severe forms of radial dysplasia (Types 2, 3 and 4—see Tests for classification of types)
  • more common than radialization procedure (see next bullet)
  • bones from your child’s wrist are removed so that the hand sits straight on the end of the ulna, which is sometimes placed in a slot within the wrist
  • often the wrist position is maintained with the use of an internal pin
• radialization surgery
  • less common than centralization procedure (see previous bullet)
  • hand is moved slightly closer to the ulnar border of the forearm and the tight muscles of the wrist are reorganized so that the hand is balanced on the end of the ulna
  • an “overcorrection” to compensate for the tendency of radial dysplasia to recur
• splinting
  • usually necessary following centralization or radialization procedures
  • splint may be used for a year or even more after surgery, until the ulna gradually broadens and becomes a more stable platform on which the wrist can balance

Treatment for the forearm

• osteotomy
  • surgery to straighten your child’s forearm bones
  • bones are cut and then rearranged into a straighter position
  • held in place by the same pin that holds the wrist

Treatment for underdeveloped or absent thumb (thumb hypoplasia)

• reconstructive surgery
  • maybe a procedure known as pollicization (constructing a thumb from an existing index finger) or by tendon transfers
  • usually performed after other procedures described above are completed

Treatment for elbow

• elbow surgery
  • rare in a child with radial dysplasia
  • to release the tight soft tissue structures at the back of the elbow that are causing the elbow to stiffen

Caring for your child after surgery

If the surgery to remove the extra digit is fairly complex, it can also involve your child’s bone, ligament and tendon. If that’s the case, your child may need to wear a cast for a few weeks. Your doctor may recommend occupational or physical therapy to help reduce scarring, stiffness and swelling and improve function.

Long-term outlook

Your child’s long-term outlook depends on the severity of her deformity, as well as the prognosis for any associated conditions she may have. Her radial dysplasia may have a tendency to recur, so she may need additional surgery(ies) as she grows.

If she has a mild case, your child will need therapy as she grows in order to maintain alignment and strength—and she will likely have small limitations of her ability to move and use her arm. If she has a more severe case, her arm will have limited range of motion, strength and function.

Coping and support

At Children’s Hospital Boston, 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 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 radial dysplasia. 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 Children’s.
• parent-to-parent: Want to talk with someone whose child has been treated for radial dysplasia? 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 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.