The positive side to Spencer’s Erbs

As tragic and horrific it is that my son was born with a birth injury and as lucky and blessed as we are to have him I think there is a big positive to Spencer’s Erbs. Spencer was born to parents who were advocates for those who are disadvantaged before his birth and now more than ever we are advocates for him specifically.

Prior to meeting Peter he had done a lot of work with children with disabilities. He had also worked with adults in a palliative care situation. I’ve worked with children and youth who are socially, emotionally and behaviourally challenged. So we both know how to advocate for Spencer to get his needs met. It’s not to say that parents of disabled or challenged children are not advocates in their own right, however; we were doing it before it entered into our own back yard.

This can have a negative effect with other professionals. We are those annoying parents who research everything, ask millions of questions and challenge professionals in their opinions. I know what it’s like to be on the receiving end of those questions and challenges.

Spencer is also lucky that I am now working in an ECE setting. I have a huge repertoire of action songs that I use with him. This will benefit him with his PT–as we will do action songs that help build the strength of his little arm without using the ‘exercise’ word. Also, because I work in the education field I have worked with many professionals including OT’s, so I know a little bit about what he needs to work on some of the fine motor skill development and other sensory related activities.

Spencer has another huge advocate in his corner who is highly educated and understands a lot about the biology and science behind his injury and challenges us to ask the questions of the professionals. Peter and I are not hard scientists, we’re social scientist. His biggest advocate, beside his mama and baba, is his NaiNai-which is chinese for grandma. She challenges his parents who challenge the doctors.

So for all the trauma and tears there is a silver lining in Spencer’s birth injury.

What is Erb’s Palsy?

As I move through this journey of understanding I am beginning to see what this injury is and how it could really have been prevented had the doctor listened to me from the beginning.

Erb’s Palsy, or Brachial Plexus Injury, is a result of damage to the Brachial Plexus Nerve centre. This nerve centre is located along the spinal cord area just by the nexk and shoulder. I have often read many explainations about C5, C6, C7, C8 and T1. However, for me-the none scientist-it was all gobilty goo speak. They might as well have been speaking in tongues. I’m a visual person, so when a support group that I joined posted a visual of exactly how these C5-8 and T1 affect the arm I had some deeper understanding. If the C5 is injured then the shoulder is affected. If the C6 is injured then the bicep is affected. If the C7 is injured then some of the bicep and forearm and wrist are affected. If the C8 and T1 are affected then the hand is injured–and this is more of Klumpke Palsy. From my personal observations I can say that all of the nerves were stretched during the delivery. Spencer’s arm was not functioning at all upon his birth.

Erb’s Palsy happens when a baby gets ‘stuck’ and needs to pulled out. Often the OBGYN will use extraction methods like forceps and vacuum suction. Or in my case the doctor pulled on Spencer and a nurse pushed down on my stomach. He pulled so hard that the nerves were stretched and now our son may have a disability for the rest of his life that was caused by someone who thought it was okay to deliver a baby on your back.

Erb’s can be prevented and had I known that this condition could exist I would have fought harder with my birth plan and I would have had Peter fight harder when I could not fight. I had wanted to have a smooth delivery with either me in a squatting position or on my back. I had researched many things–but especially how to birth a large baby. Spencer was measuring large in all my ultrasounds. All the midwifery websites and birthing websites suggested that for large babies one should birth in a squatting or on my knees position so that the baby would not get stuck. When I suggested this to the doctor he said that the hospital where I was going to be giving birth does not support this type of delivery. That should have been a red flag I should not have ignored. In all my research about large babies there was no mention of Erb’s Palsy. They talked about macrosomia and all the health complications like high or low glucose levels, trouble breathing but they never once mentioned Erbs or Brachial Palsy. So for all you mom’s out there searching the internet about how to birth large babies I hope you come across this post and really fight for your birth plan.

To sum it all up about prevention I would say the following to any expecting mothers:

1. Don’t give birth with your legs up in the air and you on your back. Your baby may get stuck as this is the most narrow and dis-functional way of giving birth.

2. If your baby is measuring large and you’re not sure about ways to give birth I would suggest you look at c-sections and alternative birthing positions for large babies–ie on your knees.

3. If your doctor does not wish to follow your birth plan walk away. That is a red flag that they are not respectful of your wishes or your concerns. This is your birth. You should enjoy this wonderful time and you should do it your way.

For further information about Brachial Plexus Nerve Injuries I would suggest the following links:

United Brachial Plexus Network

Erb’s Palsy Group (UK based)

ERBS Palsy Friends and Family (Ireland based)

Dr. Howard Clarke (Sick Kids Toronto) –he created the Toronto Scale

Shriner’s Hospital

Dr. Rahul Nath -Texas Nerve Institute – he is world renowned for his work

Spencer update

Spencer is now 5 1/2 months old. He continues to show improvement. There is muscle development extending beyond his elbow–or what appears to be–which I will check with the doctor in a few weeks when we go for a check up. Every day we see little improvements. His wrist no longer lies limp, and there seems to be subtle movement there. He also is beginning to relax his fingers. I have noticed that his right arm looks shorter but I’m not sure if this is because his fingers are curled up still or if it’s actually shorter. I will get this measured when we see the doctor as well.

On an emotional level I still continue to struggle with what has happened. I’m constantly seeking answers. I still struggle to watch videos of other children who have suffered the same injury but I know I must connect with these other parents as there is not enough information out there.

I recently got the courage to watch a PBS documentary about OBPI. I went to go watch it shortly after Spencer’s delivery but the trauma was still too fresh in my mind. Again, I started to watch it but I knew I had to finish it so that I could judge it as good information to share with everyone. It does have a lot of information and it does talk about some of the stuff I advocated for but was denied due to cultural misunderstanding. If you have a moment, please watch it here.

My next blog post is going to talk about what OBPI is and how it can be prevented.