Medically Complex Children: Our Journey

Tenleigh's Troops



Our Medically Complex Journey



New England Aquarium
Mama, Dad, & Tenleigh
New England Aquarium, Boston, MA
November 2019

Tenleigh Joy Stokes is the eight-year-old daughter of Lee Stokes and Haylee Shrake of Pana, Illinois. At thirty-two weeks’ gestation, 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 was inducted into this 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 a never before seen condition.


The Vertical Expandable Prosthetic Titanium Rib (VEPTR)


Tenleigh was 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.


REPEATED INFECTIONS:


For the first year and a half, Tenleigh battled repeated staphylococcus aureus infections. Due to infections, Tenleigh was transferred twice via jet from St. John’s Children’s Hospital to the Children’s Hospital of Philadelphia. The repeated infections resulted in a Peripherally Inserted Central Catheter (PICC Line) for antibiotics, negative pressure wound therapy (NPWT or Wound VAC) to clean her open wound, multiple debridement surgeries, removal of her left VEPTR rod and placement of a gastronomy tube. After nine surgeries within a year and a half, Tenleigh finally caught a break.


Medicaid & Medically Complex Children:


Although Tenleigh remained healthy, the family had more unexpected battles. Since birth, Tenleigh has relied on Medicaid to fund the majority of her expenses. Furthermore, the family was initially informed that if they were to pay in full, the VEPTR implantation would be approximately $100,000. Overall, each VEPTR expansion performed every four to six months would be approximately $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 was refusing 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, they were informed that 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. 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 prominently appear. 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 in order to have immediate surgery. Due to over-expanding, Tenleigh’s VEPTR had completely eroded through her ribs and needed to be reattached. As result, Tenleigh needed frequent revision surgeries over the course of the next year and a half.


IT WAS ALL but MAGEC:


On April 25, 2018, Tenleigh was scheduled for a VEPTR revision and expansion. However, due to an uninformed decision made by the medical personnel, MAGnetic Expansion Control (MAGEC) growing rods were implanted in 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. She was also required to wear 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. 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 naturally lengthen her spine. 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 and Dr Emans at Boston Children's Hospital
Tenleigh, Dr. John B. Emans, & staff
Tenleigh’s halo gravity traction follow-up appointment
February 24, 2020

Raising Awareness for Medically Complex Children:


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/


Before and after the halo x-rays
Before and After X-rays of the Halo.
Before and After the Halo Gravity Traction
Left x-ray is prior to the halo – ~130 degrees
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.


Let’s build something together.



SCOLIOSIS AWARENESS
Scoliosis Awareness!

Scoliosis Awareness

Author Recent Posts Follow meHaylsCreator & Blogger at Tenleigh’s TroopsHaylee is the creator of Tenleigh’s Troops to raise awareness for spondylocostal dysostosis and encouraging parental advocacy. Haylee work history includes… Continue reading Medically Complex Children: Our Journey

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Thoracic Insufficiency Syndrome Reunion
Supporting Parents with Medically Complex Children. Dr. Campbell & VEPTR moms at the 2018 Thoracic Insufficiency Syndrome Reunion.

Supporting Parents of Medically Complex Children

Supporting Parents of Medically Complex Children

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Haylee’s Halo Hospitalization Hacks:

Halo Gravity-Traction Hacks

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