New tool to empower parents in care for brachial plexus birth palsy

September 18, 2018

Imagine you’re the parent of a newborn with an arm injury. During your admission you’re told not to move the arm and to protect it all times. Now imagine coming back for your clinic appointment and hearing that it’s time to start moving the arm at home – unsupervised. For parents of children with brachial plexus birth palsy, this moment can be daunting.

Brachial plexus birth palsy occurs when there’s a stretch or tear in the bundle of nerves known as the brachial plexus, located near the neck and upper arm area. These injuries may cause weakness, pain, sensory loss and functional impairment. Sometimes the nerves need time to recover, anywhere from a few days to a year. Other times surgery might be required. Regardless, a focus on treatment during the waiting period can help prevent the shoulder joint from becoming stiff. The only way to keep the joint loose is through passive exercises, which must be performed early and often by the patient’s family.

“If we can find a way to keep these shoulders loose, we can eliminate many of the problems we see down the road,” said Dr. Chris Pederson, head of Texas Children’s Pediatric Hand and Microvascular Surgery programs. “Unfortunately, for a lot of parents performing the exercises can be an intimidating task.”

To help empower parents, Texas Children’s brachial plexus clinic recently teamed up with engineering students at the Oshman Engineering Design Kitchen at Rice University to develop a model that allows parents to practice movement exercises in clinic before performing them on their children at home. The project was part of an ongoing collaboration with Rice begun in 2014 by Texas Children’s Brachial Plexus Clinic Coordinator James Northcutt.

“I originally pitched the idea for the brachial plexus model to the freshman design class at Rice in the fall of 2017,” Northcutt said. “Using the model, I wanted parents to be able to identify the different parts of the shoulder and shoulder blade and feel the difference between a stiff shoulder and a healthy shoulder. And ultimately, I wanted to help alleviate the anxiety parents feel about moving their child’s arm by giving them the opportunity to practice the exercises on the model first.”

Northcutt met with the students monthly to serve as clinical lead on the project, providing information about anatomy, biomechanics, caregiver needs, therapy concerns and overall device application. Less than a year later, design team “Can’t Brachius,” produced a professional and well-functioning prototype. But it needed to be tested by parents. Mayra Oliver was the first.

When she was first told she’d need to perform exercises on her infant son, Raphael, Oliver was nervous and worried. But a demonstration of the model and the opportunity to use it herself had her feeling much more confident.

“When I first knew that Raphael was hurt, I was scared I’d do the exercises wrong and hurt him or somehow make his injury worse,” Oliver said. “Being able to feel the different parts of the shoulder on the model and then on Raphael, and then feeling the way the healthy shoulder should move freely, as opposed to the stiffness of an injured shoulder, was very helpful. I think this model will be very useful in helping families feel less nervous about doing the exercises.”

Using a survey developed in conjunction with the Rice design team, Northcutt will begin conducting a randomized control study over the coming months to determine the device’s efficacy both in educating families and in preparing them for the performing the exercises at home.

“I look forward to finding out more about our parents’ needs in helping these infants grow up to function at the highest level,” Northcutt said. “This project represents an attempt to improve patients’ futures by equipping parents to be informed, active care team members.”

The Brachial Plexus Clinic is part of Texas Children’s Brachial Plexus Program, which comprises plastic surgery, orthopedic surgery, physical medicine and rehabilitation, and occupational therapy. The clinic provides comprehensive care for brachial plexus injuries including specialized assessment, developmental and functional screening, primary nerve surgery when indicated, secondary orthopedic surgery for the shoulder and lower arm when indicated, and preoperative and postoperative care in the therapy setting. The brachial plexus team provides high-level, evidenced-based care, utilizing ultrasound to monitor shoulder integrity in infants recovering from brachial plexus injury, providing specialized splinting for prevention of joint contractures in the arm, and implementing best surgical practices for primary nerve and secondary orthopedic procedures.