Johanna’s story: brachial plexus can’t keep her down

By Jami Krayeski

Like most new parents, we eagerly waited for nine months to meet our little troublemaker, wondering if she would have blue eyes like daddy or green ones like mommy, if she would have hair or be bald, what it would feel like to hold her in our arms. The words that came out of our doctor’s mouth a few hours after our daughter was born were the last ones we expected: “brachial plexus injury.”

Our first response to learning that Johanna had a brachial plexus injury, also known as Erb’s Palsy, was to ask, “What is it and how do we fix it?”

The first few days after Johanna was born were a blur. The standard medical advice offered to parents whose baby is born with a brachial plexus injury, “watch and wait,” was hard to accept.

Johanna’s neurologist told us most babies with a brachial plexus injury recover by 3 months, and only a small percentage may need surgery. On Feb. 19, 2012, five days after she was born, we left the hospital with Johanna, ready to start the healing process and determined to follow doctor’s orders to a T.

We watched and waited. It isn’t the most difficult job in the world to dress a newborn, but when yours has a paralyzed arm, it’s scary. We were afraid to hurt her more than she already was. We learned to do everything we needed … in Johanna’s way. The hardest part was seeing people’s faces, knowing they didn’t want to hold her because they were scared they might hurt her.

Johanna started occupational therapy and physical therapy at 8 weeks old. Her therapists prescribed exercises to see how much range of motion she could gain. We waited for the magical 3-month mark. Johanna’s range of motion in her left arm had not improved.

At 4 months, she lifted her arm, with some help from gravity. We were so happy. It meant there was hope, and we needed to work just a little harder.

Two more months passed. But Johanna did not seem to improve any more.

Her pediatrician recommended an MRI scan, which showed her nerve was damaged. The neurologist did not want to operate on Johanna and suggested surgery might cause more damage. “She will always be disabled,” he told us.

We decided to get a second opinion. I started researching doctors through social networks, looking for the best doctor who specialized in brachial plexus injury. Once I heard Dr. Peter Waters’ name from more than one parent, I asked for a referral to Boston Children’s Hospital.

I decided that the ride from our home in Connecticut to Boston was going to be worth every mile.

At our first visit, Dr. Waters suggested a second appointment in six weeks to see if Johanna gained any movement. At this point, Johanna had a little bit of muscle tone in her left arm; she could drink from a bottle, using her good arm if the bottle had handles. She couldn’t bear weight on her left arm and could only get around by an army crawl or rolling.

The next time we saw Dr. Waters, he suggested surgery would be the best option to give Johanna a boost for a better adult life.

At 11 months old, Johanna had nerve transfer surgery to help her have better finger extension and elbow flexion.

Johanna came through surgery like a champ. Even though her arm was bandaged to her body, she tried to crawl.

On Feb. 14, 2013, her first birthday, Johanna restarted physical therapy.

Three weeks later, my baby who hadn’t been able to lift her arm past midline, brought her arm to her mouth. Success!

At 14 months old, she started walking … well ahead of the 20 months predicted by one doctor.

Every three months, our family packs into the car and heads north to Boston for a visit with Dr. Waters. We look forward to every visit, because we can see how much she has progressed. We know there may be more surgeries or casting, but we are committed to doing whatever it takes to make sure Johanna has a better adult life.

For more information on brachial plexus birth palsy click here or call for an appointment at 617-355-6021.