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PubMed This is a summary of 14 peer-reviewed journal articles Updated
Pediatric Orthopedics · Proximal Femoral Focal Deficiency

Building Your Child's Care Team

At a Glance

Because Proximal Femoral Focal Deficiency (PFFD) is extremely rare, parents must build a specialized multidisciplinary care team led by a limb reconstruction expert. Seeking second opinions at a Limb Center of Excellence is critical for long-term success.

Because PFFD and CFD are rare conditions—occurring in only 1 to 2 out of every 100,000 births—most local orthopedic surgeons may see only one or two cases in their entire career [1][2]. To ensure your child receives the most current and effective care, it is essential to build a specialized multidisciplinary team [2].

The Core Members of Your Team

Your child’s care is like a puzzle where several specialists must work together to create a functional result [2].

  • Pediatric Orthopedic Surgeon (Limb Reconstruction Specialist): This is the lead physician. Look for someone who specializes specifically in “limb lengthening and reconstruction” rather than general orthopedics [3].
  • Pediatric Physical Therapist: Rehabilitation is just as important as the surgery itself. You need a therapist who understands the unique protocols for distraction osteogenesis (bone lengthening) and joint stability [4][2].
  • Prosthetist: Even if you choose a reconstructive path, your child may need “lifts” for their shoes or temporary prosthetics during the growth years [5].
  • Pediatric Anesthesiologist: Because your child may undergo several staged procedures over many years, having a team familiar with pediatric pain management is vital [6][7].
  • Social Worker or Child Life Specialist: The “surgical burden”—the time spent in frames or recovering—can be emotionally taxing for the whole family. These specialists help manage the psychosocial impact [8][2].

Empowering the Second Opinion

PFFD is a complex condition with several valid treatment paths. Seeking a second (or even third) opinion at a Limb Center of Excellence is a standard and respected part of the process [2].

When you go for a second opinion, you should bring a “digital portfolio” of your child’s records to ensure the new surgeon has a complete picture:

  1. Plain Radiography (X-rays): Ideally, these should include “long-leg standing” films that show the entire limb from hip to foot [9].
  2. Lateral Scanograms: These specialized X-rays help the surgeon check for knee instability (anterior tibial translation) [10].
  3. Knee MRI: This is critical for identifying ligamentous agenesis (missing ACL or PCL), which is a common feature in CFD [11].
  4. Growth Records: Any previous measurements of the leg length difference (the “gap”) over time.

Evaluating Expertise

When meeting a potential surgeon, do not be afraid to ask direct questions. A surgeon who is experienced with PFFD will welcome an engaged and informed parent.

Ask about their experience with the SUPERhip procedure, as this is often the “foundation” for later lengthening [6][12]. You should also ask how they manage complications like joint subluxation (partial dislocation), which can happen when the bone is being stretched [13][14]. A highly experienced team will have a clear, proactive plan for these risks rather than just a “wait and see” approach [13].

Remember, you are hiring a team to guide your child for the next 18 years. It is worth the time to find the right fit [2].

Common questions in this guide

What specialists do I need for my child's PFFD care team?
Your child's care team should be led by a pediatric orthopedic surgeon who specifically specializes in limb reconstruction. Essential team members also include a pediatric physical therapist, a prosthetist, a pediatric anesthesiologist, and a child life specialist or social worker.
Why is it important to get a second opinion for congenital femoral deficiency?
Because congenital femoral deficiency is very rare, local orthopedic surgeons may only see one or two cases in their entire career. Seeking a second opinion at a specialized Limb Center of Excellence ensures your child's team is experienced with complex limb lengthening surgeries and potential complications.
What medical records do I need to bring to a PFFD second opinion?
You should bring a complete digital portfolio including long-leg standing X-rays, lateral scanograms to check for knee instability, and a knee MRI to identify any missing ligaments. It is also important to bring previous growth records that track the leg length difference over time.
What is the SUPERhip procedure?
The SUPERhip procedure is a specific reconstructive surgery used to address and stabilize the hip joint in children with PFFD. This surgery is often used as a foundation to prepare the limb for later bone lengthening procedures.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many PFFD/CFD patients do you personally treat or follow each year?
  2. 2.Are you experienced in performing the SUPERhip procedure for hip stabilization?
  3. 3.For the Prosthetist: What types of early interventions (like shoe lifts) do you use to help my toddler learn to walk?
  4. 4.For the Physical Therapist: How do you adjust your therapy methods for a child during an active 'lengthening' phase versus a recovery phase?
  5. 5.What is your specific protocol for preventing hip or knee dislocation during the 'distraction' (lengthening) phase?

Questions For You

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References

References (14)
  1. 1

    Proximal femoral focal deficiency - a rare congenital entity: two case reports and a review of the literature.

    Uduma FU, Dim EM, Njeze NR

    Journal of medical case reports 2020; (14(1)):27 doi:10.1186/s13256-020-2350-y.

    PMID: 32019581
  2. 2

    Atypical Bilateral Proximal Femoral Focal Deficiency: A Case Report and Review of Literature.

    Hammad A, Merkabaoui HE, Moukaddam H, et al.

    Case reports in pediatrics 2026; (2026()):7521784 doi:10.1155/crpe/7521784.

    PMID: 42272856
  3. 3

    Femoral Lengthening in Children with Congenital Femoral Deficiency: A Systematic Review.

    Sabry AO, Galal S, Menshawey R, et al.

    JBJS reviews 2024; (12(8)) doi:10.2106/JBJS.RVW.24.00088.

    PMID: 39172878
  4. 4

    Physical Therapy Interventions: A Case Report of Building Strength, Confidence, and Mobility in a Seven-Year-Old With Congenital Femoral Deficiency With Coxa Vara.

    Bagga IKB, Raghuveer R, Singh S

    Cureus 2024; (16(3)):e55662 doi:10.7759/cureus.55662.

    PMID: 38586791
  5. 5

    Management of severe congenital femoral deficiency: Does surgical intervention enhance prosthetic function?

    Calder P, Elsheikh A, Cross G, et al.

    Prosthetics and orthotics international 2024; (48(2)):149-157 doi:10.1097/PXR.0000000000000303.

    PMID: 38019004
  6. 6

    SUPERhip Reconstruction Treatment in Patients with Congenital Femoral Deficiency of Paley's Classification Type 1b.

    Violante Júnior FH, Farcetta Júnior F, Prina DMC, Nogueira MP

    Children (Basel, Switzerland) 2024; (11(1)) doi:10.3390/children11010075.

    PMID: 38255388
  7. 7

    Antegrade femoral lengthening and simultaneous hemiepiphysiodesis for congenital femoral deficiency.

    Georgiadis AG, Albright PD, Huser AJ, et al.

    Journal of children's orthopaedics 2024; (18(2)):200-207 doi:10.1177/18632521241229619.

    PMID: 38567040
  8. 8

    Lengthening With External Fixation Is Effective in Congenital Femoral Deficiency.

    Prince DE, Herzenberg JE, Standard SC, Paley D

    Clinical orthopaedics and related research 2015; (473(10)):3261-71 doi:10.1007/s11999-015-4461-0.

    PMID: 26194561
  9. 9

    Common Patterns of Congenital Lower Extremity Shortening: Diagnosis, Classification, and Follow-up.

    Bedoya MA, Chauvin NA, Jaramillo D, et al.

    Radiographics : a review publication of the Radiological Society of North America, Inc 2015; (35(4)):1191-207 doi:10.1148/rg.2015140196.

    PMID: 26172360
  10. 10

    The Novel Use of the Lateral Scanogram to Detect Cruciate Deficiency in Children With Congenital Femoral Deficiency.

    Taylor TN, Bridges CS, Martin BM, et al.

    Cureus 2023; (15(6)):e40799 doi:10.7759/cureus.40799.

    PMID: 37485226
  11. 11

    Multi-Ligament Reconstruction in an Adolescent Female Affected by Congenital Femoral Deficiency and Complete Anterior and Posterior Cruciate Ligament agenesis: A Case Report.

    Giusti S, Bocchi MB, De Fenu E, et al.

    Clinics and practice 2024; (15(1)) doi:10.3390/clinpract15010001.

    PMID: 39851784
  12. 12

    Can Adding BMP2 Improve Outcomes in Patients Undergoing the SUPERhip Procedure?

    Paley D, Shannon CE, Nogueira M, et al.

    Children (Basel, Switzerland) 2021; (8(6)) doi:10.3390/children8060495.

    PMID: 34200672
  13. 13

    Risk Factors for Complications in Reconstructing Congenital Femoral Deficiency.

    Shahcheraghi GH, Javid M, Nemati A

    The Journal of the American Academy of Orthopaedic Surgeons 2025; (33(9)):e511-e521 doi:10.5435/JAAOS-D-24-00090.

    PMID: 39693525
  14. 14

    Hip stability during lengthening in children with congenital femoral deficiency.

    Eidelman M, Jauregui JJ, Standard SC, et al.

    International orthopaedics 2016; (40(12)):2619-2625 doi:10.1007/s00264-016-3289-x.

    PMID: 27678508

This page about building a PFFD/CFD care team is for informational purposes only. Always consult with specialized pediatric orthopedic surgeons and a qualified multidisciplinary team regarding your child's specific treatment plan.

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