Erb’s Palsy Awareness Week 2020: A Guest Interview Spotlight to Raise Awareness

Today, I will be a featuring a local Wicomico family to help them with their goal of raising awareness for Erb’s Palsy! If you are a resident of the Eastern Shore, please feel free to reach out to me if you are doing disability events and need help with “boosting” it locally. I love to help!

Taylor is a resident of Wicomico County, Maryland. She had reached out to me about ways to celebrate Erb’s Palsy Awareness Month and Week which take both parts in October. 

Taylor’s daughter, Arianna, has Erb’s Palsy. As we know, I’m really passionate about knowing our disability community— including our littles ones! Our young ones with disabilities are our future advocates. I immediately jumped at how I could help with raising awareness for Erb’s Palsy with Taylor. Not only for our community on the Lower Eastern Shore, but in Maryland and nationally! In the state of Maryland, Governor Hogan has Proclaimed October has Erb’s Palsy Awareness Month.

Through Taylor, I have learned a lot about Erb’s Palsy, and am excited to share what I have learned! Taylor also introduced me to her friend, Nicole. She is also a resident of Maryland as well. Their daughters both have Erb’s Palsy. These two Marylander mothers formed a connection through both being parents and mothers. Nicole currently runs a Facebook support group and a non-profit group for Erb’s Palsy. Her work with Erb’s Palsy has gone far.

If you have Erb’s Palsy or are a parent/carer/guardian of a child with Erb’s Palsy, please feel free to reach out them for further connection!

WHAT IS ERB’S PALSY?

Erb’s palsy is a form of brachial plexus palsy. It is named for one of the doctors who first described this condition, Wilhelm Erb.

The brachial plexus (BRAY-key-el PLEK-sis) is a network of nerves near the neck that give rise to all the nerves of the arm. These nerves provide movement and feeling to the shoulder, arm, hand, and fingers. Palsy means weakness, and brachial plexus birth palsy causes arm weakness and loss of motion.

One or two of every 1,000 babies have this condition. It is often caused when an infant’s neck is stretched to the side during a difficult delivery. Most infants with brachial plexus birth palsy will recover both movement and feeling in the affected arm, often with daily physical therapy exercises. Parents play an active role in helping their child recover maximum function in the affected arm.

“Erb’s Palsy (Brachial Plexus Birth Palsy) – OrthoInfo – AAOS.” OrthoInfo, orthoinfo.aaos.org/en/diseases–conditions/erbs-palsy-brachial-plexus-birth-palsy. 

Interview with Taylor and Nicole:

How did you and Taylor find one another? What has been the best part of that connection? 

Taylor: I searched for a support group on Facebook. I felt lost. I was scared. That’s when I met Nicole who created the group to help others cope and to let them know they are not alone. I’m forever thankful for her and all she has done.

Nicole: I started a support group for parents of kids that suffers from Erb’s Palsy called Arm’s In Motion. This is where Taylor and I met. It’s been a joy! The best part about meeting Taylor is her selflessness and willingness to help. She’s a beautiful person inside and out with an awesome family. 

What is one misconception that people have about Erb’s Palsy? What would you like people to understand more about Erb’s Palsy? 

Taylor: A misconception of Erb’s palsy is people say, ‘It’s temporary! It’s not serious!’ They put the blame on the mothers. Sometimes if a baby is big, it will happen coming out of the birth canal. Most of the time, a cesarean can prevent it. I want others to know that this is not easy for the child. It’s a life-changing thing. Surgeries, Botox, therapies, specialists– and I, mean, the list goes on and on.

Nicole: The biggest misconception about Erb’s Palsy is that Mom did something during birth. 

What would be one piece of advice that you would tell other parents (or carers/guardians) with a child of Erb’s Palsy? What was the thing that helped you during the journey?

Taylor: One piece of advice is that you’re never alone. We are in this together. Together we can make a change. Our babies will be awesome. Having my family, friends, and our Erb’s Palsy group support is what pushes us through.

Nicole: You’re not alone and this is NOT your fault. Take some time to yourself because you will be overwhelmed. Enter each challenge with your little one with your head held high because you’re fighting for your little’s one’s life. Ask as many questions as you need until you have an understanding of what’s going on. Educate yourself on Erb’s and never take, ‘NO, we cannot,’ for an answer! If you feel your child isn’t getting the best of care, get a second opinion.

How would you like other Marylanders to celebrate Erb’s Palsy Awareness Month?

Taylor: I would like for there to be yearly awareness walks in October or events that can continue to raise awareness.

Thank you to both Taylor and Nicole for taking the time to share their knowledge and raise awareness for Erb’s Palsy! I hope you have learned something new. I surely did! Most of all, I am thankful for these two Maryland mothers for making a difference for our younger generations with disabilities! If you want to connect further for ways that you can assist with their awareness projects this month, please feel free to reach out to them.

Love, Dom