The Power of a Little Girl’s Determination

Not all doctors are the same, and not all care is the same.

When Jeanine gave birth to Kehlani, she knew her daughter needed specialized care from world-class physicians. That is why she came to Shriners Children’s Philadelphia, and even moved to the city to be closer to the hospital.

When Jeanine was pregnant with Kehlani, she was told it would be a high-risk pregnancy. The ultrasounds showed that Kehlani had gastroschisis, a birth defect that causes a baby to be born with some of their internal organs extending out of the body through a hole in the belly. In Kehlani’s case, it was her intestines. She was also told Kehlani would be born with club feet, a condition where the feet appear twisted inward at the ankle. As a result of the gastroschisis, when Kehlani was born she was immediately taken to surgery to install a silo, a bag that protects the external organ from infection.

At just 3 days old, Kehlani had another surgery to insert the intestines back into her body, and thankfully it was a success. After her initial surgery, she was also diagnosed with arthrogryposis multiplex congenita (AMC), a number of rare muscle disorders that can cause stiff joints and abnormal muscle development in children. It occurs in about one in every 3,000 children. Children with AMC are born with a limited range of motion in any or all of the following: wrists, hands, elbows, shoulders, hips, knees or ankles.

For the next three months, baby Kehlani knew the neonatal intensive care unit (NICU) as her home. For the first seven weeks she was given a feeding tube, but the doctors had to remove it because Kehlani kept trying to remove it herself.

Her resilience was observed by everyone there. Due to her continued progress, at 3 months old she was discharged from the NICU and transferred to inpatient rehabilitation. There she started physical therapy and occupational therapy. According to Jeanine, Kehlani's arms were in a straight position and locked at the elbows, unable to bend. Her hips were naturally wide open and her legs were stuck in a bent “frog-leg posture.” She stayed there for a month before being sent home to be with her family, who were filled with excitement in anticipation of her arrival. Kehlani was finally coming home.

Jeanine chose Shriners Children's Philadelphia after searching for the best doctors to treat Kehlani’s condition. Kehlani was nearly 2 when she first came to Shriners Children’s Philadelphia. During their initial consult, they met Dan Zlotolow, M.D., who explained to Jeanine that Kehlani needed her elbows released to allow her to bend her arms. Dr. Zlotolow said, “Children with AMC need an elbow release procedure done before the age of 2.”

None of this had ever been mentioned to Jeanine prior to being treated at Shriners Children's, so she knew she was in the right place for specialized care. She said that after that first meeting with Dr. Zlotolow, she could tell that, “He knew what he was talking about.” She was then introduced to Sarah Nossov, M.D., who, in tandem with Dr. Zlotolow, became Kehlani’s primary upper and lower extremity physicians. Between Dr. Zlotolow and Dr. Nossov, Kehlani has had four surgeries performed on her arms and legs.

A big fear of Jeanine’s was that Kehlani would never walk. However, during an appointment with Dr. Nossov, she reassured Jeanine that Kehlani would definitely walk, it just might take her a little longer. This greatly eased Jeanine’s worries.

Now 3 years old, Kehlani works hard in physical therapy with Maggie Reilly, D.P.T., to practice walking, mobility and balance. In terms of Kehlani’s overall care, Jeanine said it’s “Great! [Kehlani] has fun walking with Maggie in PT. She walks down the hallways saying hi to everyone as she passes their office. She was even called the 'little mayor.' Kehlani loves it there and looks forward to going to her appointments to simply just see the staff.”

Kehlani also works in occupational therapy with Jackie Miley, OTR/L, to practice grasping objects and bending her arms. Jeanine said, “Kehlani loves to walk and she is very determined and persistent to grab a hold of things, play and get what she wants.” Kehlani also received her arm splints from the rehabilitation department and her leg braces from Pediatric Orthotic and Prosthetic Services. She has to wear her leg braces 24/7, and she has to wear one type of arm splint when she naps and another when she sleeps at night. With the help of the Shriners Children's Philadelphia staff, Kehlani has gone from four appointments a week to one appointment every other week in a year and a half.

Kehlani is the middle child to big brother Kenzo and baby sister Kali, who are great motivators for her. When she sees her little sister walking, it inspires her to continue practicing her own walking. Kehlani also wants to keep up with Kenzo and do everything he is able to do. For fun, Kehlani loves to play, sing and read books. Her favorite book is Five Little Monkeys.

Jeanine said, “Kehlani is the happiest person you will meet, despite everything she has gone through. She definitely makes herself known when she’s around, and she’ll make you smile.”

Kehlani will continue to be followed by the team for all her care as she grows and makes progress. Jeanine is excited for her to join the Patient Ambassador Program as well to benefit from meeting others and sharing about their journey at the hospital.