Stories about: brachial plexus

Five things about living with Erb’s Palsy that you probably won’t find on Google

Kailyn Looby is 16-years old and has Erb’s Palsy; an injury suffered at birth that resulted in the permanent damage to nerves in her neck and shoulder. Despite the physical limitations of her disability, she enjoys soccer, hiking, swimming, rock climbing and kayaking. She loves music and wants to travel the world someday.

I’m a 16-year-old high school junior with a left brachial plexus injury (BPI). This injury has always been part of my life, and things got rough a few years ago. Here’s what I learned:

1. You need a good support system.

Kailyn Looby resize

You also need to surround yourself with supportive friends. I haven’t always had understanding friends, but when I got to high school, I met five of the most amazing, supportive people ever. That support makes all the difference. It makes everything easier knowing that you’ve got someone to back you up.

2. Meeting other kids with BPI is hugely important.

This injury has led me to connect with so many amazing people through organizations like the United Brachial Plexus Network (UBPN). I’ve met Paralympians and a man who summited Mount Everest. The other kids that I’ve met at Camp UBPN are so inspiring. I’ve made some lifelong friends. We compare hair styling techniques or surgery experiences.

It’s important, for me at least, to interact with people like me. No matter how supportive your friends and family are, the only people who can ever truly understand what living with this injury is like are other people who have it.

I’m not afraid to put myself out there when I’m surrounded by people like me. I tried archery at the last UBPN camp. I would have been much more hesitant trying it back at home, because I’d look different. It’s not something I can put into words—how it feels to be around people who get it.

3. Find your outlet.

Unfortunately, you can’t be at UBPN camp 24/7, so there needs to be an outlet. This injury can be frustrating, and it can make you angry, and sometimes it just feels so unfair. Find a way to let all the negative energy out.

My outlets are writing and music. I wrote down everything I was feeling. Getting it on paper helps me sort out what I am feeling. Music is my stress relief. When I have a bad pain day or am just frustrated, I plug in my iPod and jam.

4. Speak up.

I think it’s important that I have input in the decisions made involving my arm and treatment. That can go both ways though. There was a time when I refused to try anything, because I was convinced it wouldn’t work. Everything I had tried thus far had failed and I ended up in pain, and the slight chance that the newest idea would work wasn’t worth it to me.

It was important that I had some say in the decision-making process, but no one could convince me to take another chance. It’s a hard balance to achieve.

Also, don’t be afraid to educate people about the injury. It’s important to advocate for yourself. You’re going to have to explain it a lot—to classmates, to teachers, to coaches. I’ve got the spiel down pat. Speaking up has opened up a lot of doors for me. I’ve had the opportunity to speak for the Understanding Disabilities program in my town for several years. Last year, I had the privilege to speak as part of a panel at the John Hopkins Symposium in Baltimore.

5. The forecast is foggy, but the future is bright.

There is no way to know what this injury will throw at you. It’s bound to not be very fun sometimes. It took me three years to find a solution to my pain, but I found a solution, and so will you. The road to getting to the solution can be frustrating. There will be questions, especially when it comes time to drive, apply for a job or apply to college. You’ll figure it out. I’m going to risk sounding extremely cheesy saying this, but you can do whatever you want to do. This injury won’t hold you back from doing anything, as long as you don’t let it.

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Gift of grab: Brachial plexus surgery helps tot hug and hold for the first time

Michelle and Waters

“When I first met Dr. Waters, I felt like he was an angel. I knew we were in the right place and in the right hands,” recalls Jonathan Mora. It was November 2009, and the West Haven, Conn. father, his wife and their 6-month-old daughter Michelle had endured a bumpy ride since her birth on May 30, 2009.

During her birth, a brachial plexus injury (also known as Erb’s palsy) robbed Michelle of motion in her right arm. Michelle, like approximately three out of every 1,000 babies born in the U.S., had suffered damage to nerves in her neck and arm. Babies with a brachial plexus injury are treated with physical therapy (PT), and by 6 months, the combination of PT and natural healing usually stimulates recovery.

However, 20 percent of babies don’t recover and nerve surgery is typically recommended. Michelle fell into that group.

After her diagnosis at birth, Michelle’s parents followed the prescribed PT program with a local therapist. The family’s pediatrician assessed her range of motion and muscle strength during her regular well baby visits. Michelle had not started to recover in the first few months after birth; she could not lift her shoulder nor bend her elbow and had weakness in her wrist and hand. Her pediatrician referred the family to Peter Waters, MD, Orthopedic Surgeon-in-Chief in the Orthopedic Center at Boston Children’s Hospital.

Jonathan and his wife, Vonetta, bundled their young daughter and trekked to Boston, hoping that Waters might be able to help.

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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.

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