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Spondylocostal Dysostosis

Tenleigh’s Troops


Platform: Raise awareness to spondylocostal dysostosis, klippel – feil syndrome, and thoracic insufficiency syndrome.


Our backs tell stories no books have the spine to carry.


Raising Awareness

Advocate, Educate, Embrace, Support, and Love.



Spondylocostal Dysostosis, Klippel-Feil, & Thoracic Insufficiency Syndrome.


Spondylocostal Dysostosis:

a.k.a. Jarcho-Levin Syndrome.

No incidence figures have been reported in literature.

  • A rare congenital condition.
  • Multiple segmentation defects of the vertebrae (M-SDV) along with rib abnormalities.
  • Congenital scoliosis.
  • Short-trunk compared to height with a short neck.
CT of ribs and spine.
CT of ribs and spine.

Klippel-Feil Syndrome:

Occurs in ~ 1 in 42,000 newborns worldwide.

  • Congenital condition
  • Abnormal fusions of two or more in the cervical vertebrae
  • Low hairline at the back of the neck.
  • Limited range of motion in the neck.
CT of cervical vertebrae.

Thoracic Insufficiency

Defined by Dr. Campbell in 1993

Occurs in < 4,000 children.

  • Complex condition with the inability to support normal breathing and lung growth.
  • Congenital scoliosis.
  • Kyphosis
  • Fusions or Absent ribs
  • Genetic causes
  • Lung Disorder
CT scan of lumbar spine.
CT of Lumbar spine.

The Vertical Expandable Prosthetic Titanium Rib (VEPTR):


Treatment for Spondylocostal Dysostosis & Thoracic Insufficiency Syndrome.

Vertical expandable prosthetic titanium rib (VEPTR) treatment for spondylocostal dysostosis and thoracic insufficiency syndrome
The Vertical Expandable Prosthetic Titanium Rib aka VEPTR

Dr. Robert Campbell Jr.: Inventor of the VEPTR device as treatment for Thoracic Insufficiency Syndrome

The initial procedure consists of one or more opening wedge thoracostomies and insertion of one or more VEPTR devices, one of which may include a spinal distraction hook (hybrid VEPTR device). The thoracostomies of the hemithorax are expanded maximally at the initial procedure and the devices are placed to stabilize the correction. Repeated surgeries to lengthen the VEPTR are performed on an outpatient basis at appropriate intervals to further correct deformities of the thorax and spine.

Campbell RM. , Smith MD, Mayes TC, Mangos JA, Willey-Courand, DB, Surber, J. The treatment of thoracic insufficiency syndrome associated with scoliosis and fused ribs, Presented at the American Association of Orthopaedic Surgery, March 2000, Orlando, FL.

The Titanium Rib Project:


Dr. Smith & Dr. Campbell’s worked together for 13 years to perfect the VEPTR and the surgical technique. The VEPTR rod finally gained FDA approval in September 2004, becoming the first major advancement in spine instrumentation treatment since Dr. Harrington of Houston, Texas, created the Harrington Rod in 1962. 


A list of conditions that the VEPTR has been used to treat:


  • Jarcho-Levin (Spondylocostal dysostosis & spondylothoracic dysostosis)
  • Jeunes Syndrome
  • VATER
  • VACTERL
  • Congenital scoliosis
  • Missing or fused ribs
  • Missing or malformed vertebra
  • Kyphosis. 


Wedge Thoracostomies and Insertion of VEPTR device:


Treatment of thoracic insufficiency syndrome (TIS) and congenital spinal deformities (Ex. spondylocostal dysostosis.)


Viewer Discretion Advised.


Dr. John B. Emans at Boston Children’s Hospital.http://www.childrenshospital.org

Donations to help the family with medical expenses can be made at: http://www.gofundme.com/tenleighjoy



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