Tenleigh’s Troops Disclaimer: The following content is NOT to substitute for professional medical advice, diagnosis, or treatment. ALWAYS seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition.
Tenleigh’s Troops Platform: Raise awareness of spondylocostal dysostosis, Klippel — feil syndrome, and thoracic insufficiency syndrome. Furthermore, Tenleigh’s Troops also promotes advocacy and support!
Our Medically Complex Journey
New England Aquarium, Boston, MA
November 2019
Our Medically Complex Journey:
The following article, Our Medically Complex Journey, gives you a small glimpse of our journey thus far.
Tenleigh Joy Stokes is the eight-year-old daughter of Lee Stokes and Haylee Shrake of Pana, Illinois. Haylee unexpectedly started showing severe signs of pre-eclampsia, resulting in HELLP Syndrome (hemolysis, elevated liver enzymes, and low platelet counts). Weighing 2 pounds 6.6 ounces and 14.6 inches long, Tenleigh entered the world on March 23, 2012. Due to her prematurity, Tenleigh remained at St. John’s Hospital in Springfield, Illinois, for thirty days in the Neonatal Intensive Care Unit (NICU). Aside from being small, she appeared to be your average healthy newborn. However, at four months old, she shocked doctors in central IL with an unknown condition.
The Vertical Expandable Prosthetic Titanium Rib (VEPTR)
Tenleigh had been admitted to the Children’s Hospital of Philadelphia eight days prior to surgery for monitoring and testing. On August 20, 2013, Tenleigh had her fused ribs separated and two VEPTR rods implanted on both sides of her spine. The top of the VEPTR was clipped around an upper rib and anchored to her pelvis. The surgery was a success and twenty-four hours later, Tenleigh came off the ventilator. She remained hospitalized for a week, before beginning her six-week recovery at home.
Our Medically Complex Journey: Repeated Infections
For the first year and a half, Tenleigh battled staphylococcus aureus. Due to infections, Tenleigh was transferred twice via jet from St. John’s Children’s Hospital to the Children’s Hospital of Philadelphia. A Peripherally Inserted Central Catheter (PICC Line) for antibiotics. Additionally, a negative pressure wound therapy (NPWT or Wound VAC) to clean her open wound. Overall, Tenleigh had multiple surgeries, including removing the left VEPTR rod and placement of a gastronomy tube. After nine surgeries within a year and a half, Tenleigh finally caught a break.
After eight days of monitoring at the Children’s Hospital of Philadelphia (CHOP), Tenleigh had her first surgery at 18 months old. Dr. Campbell unfused the separated ribs and implanted two VEPTR rods on both sides of her spine. The top of the VEPTR was clipped around an upper rib and anchored to her pelvis. The surgery was a success, and twenty-four hours later, Tenleigh came off the ventilator. She remained hospitalized for a week before beginning her six-week recovery at home.
Medicaid & Medically Complex Children:
Although Tenleigh remained healthy, the family experienced additional battles. Since birth, Tenleigh has relied on Medicaid to fund the majority of her expenses. The VEPTR implantation would be approximately $100,000. Overall, each VEPTR expansion performed every four to six months would be roughly $20,000, and a VEPTR revision or exchange would be in the middle. However, In the Spring of 2015, CHOP informed the parents that Illinois Medicaid had not paid any of the bills and refused to fund future surgeries. Finally, the family hit a breakthrough after many letters from Dr. Campbell, Illinois doctors, Illinois State Representatives, along with the power of the news and social media.
The Unexpected Switch:
When the family arrived for Tenleigh’s VEPTR expansion, Dr. Campbell had an unexpected death and would have to reschedule. Tenleigh had gone almost seven months without surgery due to insurance and was experiencing significant pain. Dr. Campbell suggested having his new partner, Dr. Cahill perform the surgery. Overall, the parents agreed, and the surgery appeared to be a success.
VEPTR Eroding Through Tenleigh’s Rib:
The following month after surgery, Tenleigh’s left VEPTR started to appear prominently. Although she was not complaining of pain, it looked as if the rod could come through her skin at any time. However, Dr. Campbell’s health became compromised, and the family had to transfer care to Dr. Cahill to have immediate surgery. Due to over-expanding, Tenleigh’s VEPTR had completely eroded through her ribs. As a result, Tenleigh needed frequent revision surgeries over the next year and a half.
It was all but MAGEC:
Furthermore, Tenleigh’s surgery date for a VEPTR revision and expansion fell on April 25, 2018. However, due to an uninformed decision made by the medical personnel, implantation of MAGnetic Expansion Control (MAGEC) growing rods took the place of Tenleigh’s VEPTR’s. Overall, Tenleigh spent twenty days hospitalized from complications related to the MAGEC rods. In summary, Tenleigh’s body rejected the rods, requiring two transfers from St. John’s Hospital to the Children’s Hospital of Philadelphia. The complications resulted in removing both MAGEC rods until Tenleigh could recover. Additionally, a Thoracic Lumbar Sacral Orthosis (TLSO) brace to prevent her spine from progressing. The plan was to postpone another implantation surgery until Tenleigh gained sufficient weight or if she began to experience respiratory complications.
Halo Gravity Traction for Medically Complex Children:
However, on January 01, 2020, the family began their undetermined extended stay at Boston Children’s Hospital. Furthermore, Tenleigh had the halo application applied to her skull with four pins on January 07, 2020, spending the next month attached to a weighted pulley system to lengthen her spine naturally. On February 06, 2020, Dr. Emans removed the halo and implanted two customized growing rods. Overall, Tenleigh’s Cobb Angle (spinal degree of curvature) improved from approximately 120-130 degrees to 60-70 degrees! Tenleigh immediately felt relief and could perform her activities of daily living (ADL’s) better than before and continued to impress the doctors by recovered at lightning speed! After 59 days away from home, the family finally returned home on February 28, 2020.
Tenleigh’s halo gravity traction follow-up appointment
February 24, 2020
Spondylocostal dysostosis (SCD):
Klippel Feil syndrome (KFS):
https://rarediseases.info.nih.gov/diseases/10280/klippel-feil-syndrome
Thoracic Insufficiency Syndrome (TIS):
https://pubmed.ncbi.nlm.nih.gov/26747620/
Right x-ray is after the halo traction and insertion of rods – ~65 degrees
You were given this life because you are strong enough to live it.
In this family, nobody fights alone.
Our backs tell stories no books have the spine to carry.
I am not an expert mom who has all the answers. However, I am the mom who cannot stop looking for them.
Let’s build something together.
Tenleigh’s Troops 