I just learned that October is National Disability Employment Awareness Month and the week of writing this entry is also Brachial Plexus Injury (BPI) Awareness week. On top of this intersection of awareness, I had an experience last week as a participant of a research study that made me realize I had quite a bit to offer in personal insight, so I wanted to take this time to share a few things about my injury. While it’s a stretch to say that this birth complication is common, it is more likely than winning the lottery with 2-5 out of every 1000 births being associated with the injury.
Like many things, this condition may be unavoidable at times, but it can certainly be prevented much of the time with awareness, understanding of risk factors, and open communication with a physician. In hopes of creating more profound awareness, I have put together a list of ideas to understand about my type of injury. Some of it is factual, but some is simply my perspective.
Things to understand, in no particular order:
- The Brachial Plexus is the nerve bundle that controls each arm. It exits the spinal cord at the base of the neck and upper thoracic spine. When these nerves are stretched, torn, avulsed (complete separation) or otherwise damaged, function and sensation can be affected in the shoulder, arm, and hand. The arm effectively becomes paralyzed, either fully or partially.
- When the injury occurs at birth, it can heal on its own, but sometimes will result in permanent nerve damage, which was the case during my birth.
- A brachial plexus injury can occur either during the birthing process or later in life. There are fairly distinct differences in the experiences people have with the injury depending on when they incurred it. When incurred later in life, function loss may be more severe and accompanied with sporadic nerve pain. Function loss can also be more specific with some aspects of function not lost at all. Birth injuries tend to carry more global functional impairment, but also generally have less daily nerve pain. The limb and surrounding muscles in the back can also be underdeveloped in adults with the birth injury.
- One of the common ways the injury occurs is where the newborn’s shoulder gets stuck on the mother’s pubic bone during birth. When this happens, pulling on the head of the baby can stretch and damage the brachial plexus nerve bundle at the base of the neck. This is called shoulder dystocia. This is how I was born.
- Large babies will be more prone to shoulder dystocia, especially in smaller mothers. For context, I was a large baby at 11lbs 9oz and 23.5”. My mom is also around 5’ tall. A common risk factor for producing a large baby is for the mother to be pre-diabetic or have gestational diabetes. This was also the case for my birth. This is a risk factor that should be discussed with a physician when found out, as birth complications may arise and options should at the very least be discussed. A cesarean section procedure would have likely been a better option for my birth.
- Children with BPI are just that, they are children first. I can only plead to let children be children and try not to hold them back. Children learn by doing, learn by making mistakes. Allow them to stumble and figure things out. I was not allowed to do many things I wanted to try as a child, and I really just want others in a similar situation to not be further limited by over-protection. Also, try making physical therapy fun. Make it a game. Use it as bonding time. If the child is crying (or even screaming), listen to them and stop what you’re doing. You might be hurting them, but even worse giving them a traumatic experience.
- While I have a personal belief that we owe it to our future selves to invest in our health and wellness right now, people with BPI have a greater responsibility to themselves to act. Secondary complications are common and include over-use of the non-affected arm and an unnatural curvature of the spine (scoliosis). These can be mitigated if action is taken before then problems become painful. While it’s never too late to start, starting sooner will almost certainly lead to a greater quality of life down the road.
- Having a Brachial Plexus Injury is certainly nothing I would ever wish a person to have to deal with, but there are certain advantages that can accompany the condition. The reality is that the world is not designed to accommodate every disability. Because of this, I know that I have developed a sense of creativity as a means to navigate daily life. There is no one set way to do most things but being challenged on a regular basis fosters creativity more effectively than when everything is easy. I’m also a very independent person and I believe that growing up with my injury has also made me very determined, more so than I might be without my experiences shaping my expectations. Like many things in life, having a BPI is as good or bad as you make up your mind to be.
- Living with a BPI is somewhat of an invisible disability. Afterall, the arm is still there. My experience is that most people with a BPI focus on how different they look because of their arm, whereas most other people have no idea. It’s nothing to be self-conscious about, but at the same time should be taken empathetically when communicated. I’ve read countless stories about a person’s negative experiences with BPI being dismissed by employers, partners on dates, etc. Each injury is just as individualized as the person who has it. Denying someone else’s experience because you have never experienced what they are going through is really one of the most hurtful acts a person can commit. Empathy is putting yourself in someone else’s shoes to gain a perspective you don’t have experience with, and all humans could benefit from developing the skill.
I could go on and on, but I think this is a good introduction to BPI awareness. There are many disabilities, but this is mine and I would be thrilled if just one person had a better experience by learning from mine. If you want to learn any further about BPI, I suggest the United Brachial Plexus Network, a non-profit organization with tons of information and resources related to this type of impairment.