Tenleigh's Medical Expenses

Tenleigh Joy Stokes (daughter of Haylee Shrake and Lee Stokes) was born 8 weeks preematurely on March 23, 2012 at St. John's Children's Hospital in Springfield, IL. Tenleigh weighed 2 lbs 6.6oz and was14.6 inches long. She spent 30 days in the NICU (Neonatal Intensive Care Unit) to primarily gain weight.

4-Month Routine Checkup: the Nurse Practitioner noticed she was "tugging" really hard to breathe; an x-ray was ordered and we were immediately sent to St. John's. We were told that Tenleigh had multiple bone deformations that consisted of fused/missing ribs, scoliosis, hemi-vertebrae’s, and her chest wall was abnormally small. There was not a known name or treatment that the doctors were aware of. We were then sent to a geneticist to seek further answers. However, Tenleigh's genetic testing came back normal but the Doctor explained that based on her anatomy, she would not meet basic milestones like walking and would not live past her 3rd birthday. 

Dr. Robert Campbell Jr.: After such devastating news, we took our research into our own hands. After months of dead end roads in Illinois, we found Dr. Robert Campbell Jr.  on google. Dr. Campbell invented the VEPTR's (vertical expandable prosthetic titanium ribs) as a treatment option for Thoracic Insuffiency Syndrome. Dr. Campbell was practicing out of The Children's Hospital of Philadelphia (CHOP), Center of Thoracic Insuffiency Syndrome. We arrived in Philadelphia in May of 2013 for a consult with Dr. Campbell to find out if Tenleigh would be a candidate for the VEPTR's. 

Consultation: Dr. Campbell walked in to examine Tenleigh and go over all the results from the tests they had performed on her. We discussed what we had been told in the past and how we ended up in his office. Dr. Campbell informed us that not only was Tenleigh a candidate but also said "I will not let her die". To top everything off we were finally given a medical name, spondylcostal dystosis. Dr. Campbell explained that he would implant the VEPTR's around ribs near her clavicle and also anchored at her pelvis. The VEPTR's would work as a "jack" and she would need to be expanded every 4 - 6 months until she is done growing. All of our questions we had thought of in the past year had finally been answered.

First Surgery: We arrived 2 weeks early for additional testing and monitoring prior to surgery. Tenleigh's first VEPTR implant took place on August 20, 2013. After the surgery was over, Dr. Campbell brought us into a room and showed us the difference in x-rays. There was such an undeniable difference! We were re-united with Tenleigh in the Pediatric Intensive Care Unite (PICU) where Tenleigh was still sedated and on a ventilator. She had drains, tubes, and wires coming out every direction; along with 4 large incisions on her back. 

Recovery: The first surgery was the most extensive recovery Tenleigh has recovered from. She was on valium, oxycodone, and tylenol for the first 3 weeks post op and learning how to move again was a challenge. But after 6 weeks, Tenleigh was adjusting to the new rods.

Infections: The first 2 years of having the VEPTR's implanted consisted of battling infections. Tenleigh was repeatedly admitted and flown via jet from Springfield, IL to Philadelphia, PA to treat the infections. Tenleigh went through multiple "wash out" surgeries that resulted in having a wound vacc placed, long term antibiotics, a rod removal, feeding tubes.

Current: Tenleigh had her 20th surgery done by our current surgeon, Dr. Patrick Cahill at CHOP on December 4, 2017. 


Funding: The average trip Philadelphia can cost anywhere from $3000-$5000 per trip depending on how long we are there. We have to take 3 days to get there because of Tenleigh's condition.  Hotels are very expensive around the Children's Hospital. Sometimes we are forced to leave one hotel to another one because of overbooking. Food, gas and upkeep on our family vehicle is very challenging. We recently purchased a used van for these trips...another costly expense. Having broke down in Ohio during the middle of summer after one of her surgeries was a nightmare come true. Thanks to the Ohio state police for taking care of us. $4000 for a rebuilt transmission was another unexpected cost. Since Tenleigh is only 5 years old(20 surgeries so far) and is looking at surgeries until she stops growing, she is looking at somewhere around 40 more if everthing goes alright. When she stops growing the VEPTR's will be removed and she will have a spinal fusion. Thanks for your help in saving her life.