Spondylocostal Dysostosis
Tenleigh’s Troops
Platform: Raise awareness to spondylocostal dysostosis, klippel – feil syndrome, and thoracic insufficiency syndrome.
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Spondylocostal Dysostosis, Klippel-Feil, & Thoracic Insufficiency Syndrome.
Spondylocostal Dysostosis:
a.k.a. Jarcho-Levin Syndrome.
- 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.
Klippel-Feil Syndrome:
- 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.
Thoracic Insufficiency
Defined by Dr. Campbell in 1993
- Complex condition with the inability to support normal breathing and lung growth.
- Congenital scoliosis.
- Kyphosis
- Fusions or Absent ribs
- Genetic causes
- Lung Disorder
The Vertical Expandable Prosthetic Titanium Rib (VEPTR):
Treatment for Spondylocostal Dysostosis & Thoracic Insufficiency Syndrome.
Dr. Robert Campbell Jr.: Inventor of the VEPTR device as treatment for Thoracic Insufficiency Syndrome
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.
Before & After X-Rays Halo Gravity Traction 
Before & After X-Rays Halo Gravity Traction
Wedge Thoracostomies and Insertion of VEPTR device:
Treatment of thoracic insufficiency syndrome (TIS) and congenital spinal deformities (Ex. spondylocostal dysostosis.)
Viewer Discretion Advised.
Donations to help the family with medical expenses can be made at: http://www.gofundme.com/tenleighjoy
Creator & Blogger at Tenleigh's Troops
Haylee is the creator of Tenleigh's Troops to raise awareness for spondylocostal dysostosis and encouraging parental advocacy. Haylee work history includes Pediatrics Nurse Technician at HSHS St. John's Children's Hospital along with 500 hours of clinical experience.
Latest posts by Hayls (see all)
- Haylee’s Halo Hospitalization Hacks: - May 17, 2020
- Parenting a Medically Complex Child During a Pandemic - May 15, 2020
- Tenleigh’s Troops - April 15, 2020
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