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PubMed This is a summary of 16 peer-reviewed journal articles Updated
Orthopedic Surgery · Radial Longitudinal Deficiency

Building Your Care Team: The Multidisciplinary Approach

At a Glance

Children with radial longitudinal deficiency (RLD) require a multidisciplinary medical team because the condition is frequently linked to internal health issues. Care should ideally be coordinated at a high-volume pediatric hand center with specialized surgeons, geneticists, and therapists.

Because radial longitudinal deficiency (RLD) is so frequently linked to internal health conditions (up to 93% of cases in some groups), your child needs more than just a bone specialist [1]. Managing this condition requires a “team of teams”—a group of specialists who look at every part of your child’s health, from their blood cells to their heart and kidneys [2][3].

Studies show that families who seek care at high-volume pediatric hand centers often see better results, including earlier surgery times and more coordinated care across different specialties [4].

Your Core Medical Team

A complete multidisciplinary team for RLD should include the following specialists:

  • Pediatric Hand or Orthopedic Surgeon: This is the lead specialist for the arm and hand. They manage the stretching, casting, and surgical procedures like centralization and pollicization [5][6].
  • Clinical Geneticist: They are essential for ruling out underlying syndromes. They will order and interpret specific tests (like chromosomal breakage studies). They may also recommend broad genetic screening, like a chromosomal microarray or whole-exome sequencing, to catch microscopic genetic changes that physical exams might miss [2].
  • Pediatric Occupational Therapist (OT): A specialized OT works with your child from infancy. They provide “pre-pollicization training,” which helps your child learn to use their index finger as a thumb before surgery even happens [7].
  • Pediatric Cardiologist and Nephrologist: These doctors use ultrasounds to ensure the heart and kidneys are functioning correctly, which is a standard part of the “VACTERL” and “Holt-Oram” screening process [8][9].
  • Hematologist: If blood or platelet issues (like TAR syndrome or Fanconi anemia) are suspected, a hematologist will monitor your child’s blood counts and manage any risks [10][11].

Choosing the Right Surgeon

Not every orthopedic surgeon has deep experience with the specific, delicate surgeries required for RLD. When vetting a surgeon, look for these markers of expertise:

  1. Volume of Cases: High-volume centers perform these rare surgeries much more frequently, which often leads to more standardized care and fewer complications [4][12].
  2. Growth Plate Preservation: Ask how they protect the physeal blood supply (the blood flow to the growth plates). Expert surgeons use specific techniques to ensure that surgery doesn’t accidentally stop the arm or finger bones from growing [13].
  3. Aesthetic Refinements: For thumb surgery (pollicization), experienced surgeons often use specialized “flaps” of skin and tissue to make the new thumb look more natural [14][15].
  4. Use of Validated Tools: Expertise is also shown by surgeons who use standardized tools (like the T-GAP) to measure and track how well your child’s hand is actually working after surgery [16].

The Importance of “One-Day” Clinics

Some specialized hospitals offer “Congenital Hand Clinics,” where your child can be seen by the surgeon, the therapist, and the geneticist all in the same day [3]. This model ensures that everyone is on the same page and reduces the stress of managing dozens of separate appointments. If your local hospital doesn’t offer this, consider seeking a second opinion at a major regional pediatric center [4].

Common questions in this guide

What specialists should be on my child's radial hemimelia care team?
A comprehensive team should include a pediatric hand or orthopedic surgeon, a clinical geneticist, and a specialized pediatric occupational therapist. Because the condition is often linked to other health issues, specialists like pediatric cardiologists, nephrologists, and hematologists are also crucial.
Why does my child need a geneticist for a forearm condition?
Radial longitudinal deficiency is strongly linked to underlying systemic syndromes like VACTERL or Fanconi anemia. A clinical geneticist will order specific screening tests to catch genetic changes and internal issues that a standard physical exam might miss.
What should I look for when choosing a surgeon for my child's hand?
Look for a pediatric orthopedic surgeon at a high-volume center who frequently performs centralization and pollicization. It is essential they use specific techniques to protect the blood supply to the growth plates to ensure the arm bones continue growing properly.
What is a congenital hand clinic?
A congenital hand clinic is a specialized medical center where your child can see multiple experts, such as the surgeon, therapist, and geneticist, all on the same day. This coordinated approach ensures all specialists are aligned on the care plan and reduces the stress of managing dozens of appointments.
How can occupational therapy help before my child's thumb surgery?
A specialized pediatric occupational therapist provides pre-pollicization training starting in infancy. This therapy helps your child learn to use their index finger to pinch like a thumb before the actual surgery even happens.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.Does this hospital have a dedicated 'Congenital Hand Team' where I can see multiple specialists in one visit?
  2. 2.How many centralization and pollicization procedures do you perform each year?
  3. 3.Can you explain how you protect the growth plates during surgery to minimize the risk of a significantly shortened forearm?
  4. 4.Is there a therapist here who specializes in 'pre-pollicization training' to help my child learn to pinch before the thumb surgery?
  5. 5.Which physician is responsible for making sure all my child's systemic screenings (heart, kidney, blood) are completed and reviewed?

Questions For You

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References

References (16)
  1. 1

    [Radial club hand prevalence at Shriners Hospital-Mexico and literature review].

    Fortis-Olmedo IO, Hernández-Álvarez MA, González-Cepeda E, Avalos-Arroyo G

    Acta ortopedica mexicana 2019; (33(2)):112-117.

    PMID: 31480113
  2. 2

    Phocomelia Re-Examined Using the CoULD Registry.

    Wall LB, Ishamuddin S, Steinman S, et al.

    The Journal of hand surgery 2025; (50(10)):1224-1231 doi:10.1016/j.jhsa.2025.08.006.

    PMID: 40920151
  3. 3

    Team Approach: The Care of Children with Hand and Upper Limb Differences.

    Ray S, Manske MC, James MA

    JBJS reviews 2023; (11(7)) doi:10.2106/JBJS.RVW.23.00017.

    PMID: 37411042
  4. 4

    Socioeconomic Disparities in Surgical Care for Congenital Hand Differences.

    Kalmar CL, Drolet BC

    Hand (New York, N.Y.) 2024; (19(1)):104-112 doi:10.1177/15589447221092059.

    PMID: 35611502
  5. 5

    Outcomes of early treatment of radial dysplasia.

    Nguyen PD, Light TR, Mai TT

    Journal of clinical orthopaedics and trauma 2024; (50()):102357 doi:10.1016/j.jcot.2024.102357.

    PMID: 38370427
  6. 6

    Clinical and functional results of radial club hand with centralization and pollicization using the second metacarpus: A clinical case series.

    Lahiji FA, Asgari F, Mirzaee F, et al.

    International journal of surgery case reports 2019; (61()):285-290 doi:10.1016/j.ijscr.2019.07.076.

    PMID: 31401436
  7. 7

    Staged Centralisation and Pollicisation for Radial Longitudinal Deficiency: A Case Series Emphasising Pre-pollicisation Index-Middle Finger Pinch Training.

    Kodama A, Goto N, Munemori M, et al.

    The journal of hand surgery Asian-Pacific volume 2026; doi:10.1142/S2424835526500384.

    PMID: 42290076
  8. 8

    Postmortem Diagnosis of Heart-hand Syndrome Associated With a 7p22.1p22.3 Deletion in a 16-week-old Fetus.

    Tessier A, Callier P, LeMeur N, et al.

    Pediatric and developmental pathology : the official journal of the Society for Pediatric Pathology and the Paediatric Pathology Society 2019; (22(2)):146-151 doi:10.1177/1093526618799293.

    PMID: 30193563
  9. 9

    Defining Features of the Upper Extremity in Holt-Oram Syndrome.

    Wall LB, Piper SL, Habenicht R, et al.

    The Journal of hand surgery 2015; (40(9)):1764-8.

    PMID: 26243320
  10. 10

    Thrombocytopenia with Absent Radii (TAR) Syndrome Without Significant Thrombocytopenia.

    Cowan J, Parikh T, Waghela R, Mora R

    Cureus 2020; (12(9)):e10557 doi:10.7759/cureus.10557.

    PMID: 33101804
  11. 11

    An Algorithm for Management of Radial Longitudinal Deficiency.

    Bhat AK, Pai G M

    The journal of hand surgery Asian-Pacific volume 2024; (29(6)):508-518 doi:10.1142/S2424835524300093.

    PMID: 39544041
  12. 12

    Incidence of Acute Complications Following Surgery for Syndactyly and Polydactyly: An Analysis of the National Surgical Quality Improvement Program Database from 2012 to 2014.

    McQuillan TJ, Hawkins JE, Ladd AL

    The Journal of hand surgery 2017; (42(9)):749.e1-749.e7 doi:10.1016/j.jhsa.2017.05.011.

    PMID: 28648327
  13. 13

    Does Preservation of Metacarpophalangeal Joint Vascularity Protect Against Physeal Arrest in Index Finger Pollicization?

    Reghunathan M, Hinchcliff K, Schneidau C, et al.

    The Journal of hand surgery 2024; (49(10)):1007-1011 doi:10.1016/j.jhsa.2024.05.010.

    PMID: 38970601
  14. 14

    Improvement of thenar bulk appearance in index finger pollicization with adipofascial flap fashioned from pouce flottant/rudimentary thumb.

    Bercu C, Rosner B, Korah H, et al.

    Journal of hand and microsurgery 2025; (17(3)):100248 doi:10.1016/j.jham.2025.100248.

    PMID: 40224953
  15. 15

    Index Finger Pollicization for Hypoplastic Thumb: Surgical Technique.

    Sood RF, Taghinia AH, Upton J, Labow BI

    Plastic and reconstructive surgery 2021; (147(1)):127-129 doi:10.1097/PRS.0000000000007442.

    PMID: 33370056
  16. 16

    Validity and Reliability of the Thumb Grasp and Pinch Assessment for Children After Reconstruction of Congenital Hypoplastic Thumbs.

    Sletten IN, Winge MI, Hellevuo C, et al.

    The Journal of hand surgery 2024; (49(10)):1041.e1-1041.e8 doi:10.1016/j.jhsa.2022.12.017.

    PMID: 36775792

This page provides educational information about assembling a multidisciplinary care team for radial longitudinal deficiency. It does not replace professional medical advice from your child's pediatric specialists.

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