Staying Upbeat Through Every Diagnosis
How 9-year-old Kendall Lewis navigates life with VACTERL association.
If you ask 9-year-old Kendall “Miss K” Lewis how many surgeries she’s had in her life, she will laugh and say, “Too many!”
Within hours of her birth on June 2, 2011, Kendall was transported to UF Health Shands Children’s Hospital for multiple abnormalities. That day, Kendall was diagnosed with VACTERL association, a disorder that affects numerous body systems.
Upon learning of their newborn child’s diagnosis, the Lewis family was overwhelmed with emotion.
“We had never heard of it,” said Mindy Lewis, Kendall’s mother. “It seemed like every time we saw someone the first few days, we found out something else was wrong.”
VACTERL is an acronym that represents a multitude of birth abnormalities:
- V stands for vertebral defects – Kendall’s L4 vertebrae is a hemivertebrae, or wedge-shaped. She has deformities of the sacrum and coccyx, a tethered spinal cord and scoliosis, which has progressed over the last year.
- A stands for anal atresia – Kendall had a low imperforate anus, meaning she was born without the anal opening where it should have been.
- C stands for cardiac defects – Kendall has Tetralogy of Fallot with pulmonary atresia (TOF/PA). The vein and valve responsible for bringing blood to the lungs from the heart was essentially non-existent. She has a number of other heart issues as well.
- T/E stands for tracheoesophageal fistula – Kendall had a tracheoesophageal fistula with esophageal atresia – an abnormal connection between her trachea and her esophagus – and her esophagus was not attached to her stomach.
- R stands for renal anomalies – Kendall has a duplicated collection system on her right kidney.
- L stands for limb abnormalities – Some people diagnosed with VACTERL association have limb defects for abnormalities. This is the only component of the disorder that Kendall does not have.
Mindy says her daughter’s diagnosis has changed her family’s life.
“As the parent to a complex medical child – and one who also happens to be immunocompromised – we have had to adjust our world a little,” Mindy said.
At just five days old, Kendall underwent her first set of surgeries including her fist bowel reconstructive surgery and a procedure to repair and reconnect her esophagus to her stomach.
Kendall has endured a total of three open-heart surgeries: her first at 26 days old, her second at three years old and her third at five years old.
“It was nerve-wracking, knowing that you were essentially helpless and trusting a medical team and some equipment to keep your baby alive while they stop her heart to work on it,” Mindy said.
In the spring of 2015, Kendall underwent a cardiac catherization to help the narrowing in her conduit due to her immune system disagreeing with donor tissue. As her body struggled with rejecting her new heart conduit, Kendall had a second bowel reconstructive surgery.
In 2018, the Lewis family found out that Kendall had likely suffered from a small stroke after her second open-heart surgery in 2014. During an MRI scan, it was revealed that she also has hemiplegic cerebral palsy, in which one side of the body is affected.
For the Lewis family, it feels like every year brings a new battle for Kendall.
“Some things resolve over time or become a dormant issue,” Mindy said. “Every year since she was born, we have been given a new diagnosis to go with her other ones.”
Regardless of the medical curveballs she is thrown, Kendall continues to adapt to her ever-changing condition with a positive, upbeat attitude.
As a rising fourth grade student, Kendall participates in numerous activities in and out of the classroom – one of the most recent activities being volleyball.
According to Mindy, volleyball has given Kendall something she can strive for and helps strengthen her body, which was mildly affected by the stroke and hemiplegic cerebral palsy. When Kendall plays volleyball, she gets to be a “normal” kid.
“Her coordination is better, her spirits are better [and] she is actually pretty darn good,” Mindy said.
Kendall has significantly improved her pulmonary function test over the past year, and her enhanced lung capacity is believed to be the result of playing a sport.
UF Health Shands Children’s Hospital has been a home away from home for the Lewis family since the day Kendall was born nine years ago. Kendall has faith and trust in the facility, according to Mindy.
Kendall is followed by ten specialty teams at UF Health including cardiology; pulmonology; ear, nose and throat; immunology; pediatric surgery; neurology; orthopedic surgery; nephrology; gastroenterology and plastic surgery.
When Kendall visits UF Health Shands Children’s Hospital for her appointments, she is more excited than she is nervous.
Kendall has become friends with many student volunteers during her time on UF Health campus, and many of them will visit her during her stays, painting their nails and playing with makeup.
“UF Health is a family,” Mindy said. “That’s why they are a part of our family.”