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Thoracic Insufficiency Syndrome



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Thoracic Insufficiency Syndrome (TIS)


Why fit in when you were born to stand out? — Dr. Seuss.


Platform:


Overall, our goal is to bring awareness to spondylocostal dysostosis, klippel — feil syndrome, and thoracic insufficiency syndrome. Furthermore, Tenleigh’s Troops also promotes advocacy and support!


Disclaimer:


Furthermore, the following content is NOT a substitute for professional medical advice, diagnosis, or treatment. Overall, you should ALWAYS seek your physician regarding any questions or concerns.


What is thoracic insufficiency syndrome?


According to Boston Children’s Hospital, “Thoracic insufficiency syndrome is a chest wall deformity that interferes with lung function and development. Children with thoracic insufficiency syndrome are born with the condition, which tends to get worse as they grow. In most cases, they are also born with congenital scoliosis.”


Thoracic Insufficiency Syndrome BCH
TIS — Image Credit: Boston Children’s Hospital

Thoracic Insufficiency Syndrome Umbrella:


Thoracic Insufficiency Syndrome
“Our backs tell stories
no books have the spine to carry”


― Rupi Kaur

Spondylocostal Dysostosis (SCDO):

a.k.a. Jarcho-Levin Syndrome.

OVERALL, 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.
Thoracic Insufficiency Syndrome
Spondylocostal dysostosis — thoracic CT.
Tenleighs Troops
SCDO — THORACIC CT.

Klippel-Feil Syndrome (KFS):

APPROXIMATELY ~ 1/42,000 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.
Tenleighs Troops
Klippel — Feil Syndrome — Cervical CT

Thoracic Insufficiency Syndrome (TIS):

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
Thoracic Insufficiency Syndrome
Tenleigh’s CT Scan
Thoracic Insufficiency Syndrome
Lumbar — SPINE CT.
Thoracic Insufficiency Syndrome
Lumbar CT

Thoracic Insufficiency Syndrome Treatment:


“I’m not the mom with all the answers, I’m the mom who never stops looking.


The Vertical Expandable Prosthetic Titanium Rib (VEPTR):


Tenleighs Troops
The Vertical Expandable Prosthetic Titanium Rib aka VEPTR

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


The initial procedure consists of one or more opening wedge thoracotomies 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-Cour and, DB, Surber, J. The treatment of thoracic insufficiency syndrome associated with scoliosis and fused ribs, Presented at the American Association of Orthopedic 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


List of Conditions VEPTR’s can Treat:


Spondylocostal dysostosis

spondylothoracic dysostosis

VACTERL

Jeunes Syndrome

Congenital scoliosis

Missing or fused ribs

VATER

Missing or malformed vertebra

Kyphosis


Wedge Thoracostomies & VEPTR Insertion:



Viewer Discretion Advised.


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

Thank YOU for Visiting Tenleighs Troops!


Tenleighs Troops
We are in this TOGETHER! COVID-19 Pandemic.

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




Haylee Shrake

Tenleigh’s Troops Creator & Blogger

Haylee Shrake
Haylee Shrake — Creator of Tenleigh’s Troops

Awareness, Advocate, Educate, Embrace, Support Scoliosis, and Love Life.

Tenleigh’s Troops was created in 2013 as a convenient tool to update friends and family during Tenleigh’s surgeries. Furthermore, the “Troops” show their support by posting a selfie wearing their Tenleigh’s Troops Support Apparel or the color green for Scoliosis Awareness.

Additionally, Shrake has been a Nurse Technician since 2009 with experience in Long-Term Care Facilities and Hospitals. The previous place of employment was at HSHS St. John’s Children’s Hospital in Springfield, IL.

Contact Haylee Shrake at
haylee.shrake@tenleighstroops.org
haylee.shrake26@gmail.com



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