From long odds in the NICU to young authors

Eight-year-old Kendrick (Kenny) is active and adventurous. He loves soccer and was an athlete in the Special Olympics last year. “He has one speed, which is one hundred at all times,” said his mother, Sabine.

But Kenny and his twin sister, Neema, started life facing very long odds. Born prematurely at 23 weeks, Neema’s estimated chance of survival was 26 percent, Kenny only 13 percent. Each weighed just over a pound.

“I was going back and forth every single day to the NICU, and every day, it was a rollercoaster,” Sabine said. “One day, everything’s going good. The next day, everything just went downhill. You leave and then an hour later, you get a call.”

Life with cerebral palsy

Neema’s only lingering complication from their early months in the NICU is an injury to her foot. While it doesn’t affect her mobility, it has affected her self-esteem and confidence. Kenny’s story has been different. He has cerebral palsy and hydrocephalus (a buildup of fluid in the brain). One of Kenny’s favorite doctors at Connecticut Children’s is neurosurgeon Jonathan Martin, MD, who takes care of the shunt that drains excess fluid from Kenny’s brain, replacing it and adjusting its valve, when needed.

“The neurosurgery department really has our heart,” Sabine said.

In addition to Dr. Martin, Kenny receives care from many of Connecticut Children’s specialties. He wears leg braces because of the coordination challenges and muscle weakness caused by cerebral palsy, so he sees Orthopedics. His Physical Therapy, Occupational Therapy and Speech Therapy teams help him achieve developmental milestones, in coordination with his school. He also sees teams in Neurology, Pulmonary Medicine, Gastroenterology and Ophthalmology.

Inspiring other families

“Cerebral palsy is a spectrum and a lot of times, people think of the worse end of the spectrum. You can have this diagnosis and still be functional. You’re going to have some limitations, but you’re still going to live a normal life,” Sabine said. “Kendrick is an example of that. If you have the right resources, the right support, the diagnosis does not have to dictate what your life is going to look like.”

The more complex a child’s care needs are, the more important it is to have well-oiled coordination between the many specialty teams. Kenny and Neema’s medical journey started in Connecticut Children’s NICU and has continued here as they’ve grown. Today, Neema is caring, kind and creative. Kenny is fearless, adventurous and fun-loving. “They call him ‘the mayor’ at school, because he knows everybody. He loves to help other kids in class. He loves meeting new people,” Sabine said.

 The family is also working on two books to inspire others—one focused on Kenny’s physical challenges and the other tracing Neema’s journey to express and accept herself. As a practicing nurse practitioner (APRN), Sabine has seen many kids with health challenges. “If we can show kids from an early stage, ‘Hey, don’t let this be a limit for you,’ I think more people would be able to push through those barriers.”