This is a guest post by my cousin Sebastian Corbin about Erb’s Palsy.
“Do Not, Do Not Fire”
It was July of 1994, I was in basic training for the United States Army laying in a prone position at the firing range when a “cease-fire” horn sounded and before we started, I was given very strict orders, “DO NOT, DO NOT fire once you hear this sound!” I heard it loud and clear but I also saw an opportunity to shoot a deer at the same time. As a boy, I never had this opportunity before, and I couldn’t resist! “PRIVATE CORBIN! Didn’t you hear the cease fire call?” I said to the officer, “Yes, my mistake!” He replied, “Your mistake can cost a life! Your mistake is simply an excuse of your lack of attention to details!” I learned through this experience that every mistake has a cause and is preventable.
Imani Jordan is Born
On June 22, 2012, a doctor was completing 9 months of one of the greatest days of my life, helping my wonderful and beautiful wife Maritza Corbin, give birth to our already known baby girl, Imani Jordan Corbin. My emotions were crazy; I’m excited, nervous, in shock, not knowing what or how to speak! The doctor is pulling, my wife is pushing and out comes this beautiful bundle of love. After all is calm and going through a few issues, hours go by and we’re finally able to hold and love on our little Imani J. We noticed right away her right arm is not moving. “This happens from time-to-time. It will be fine in a few days,” were words I’ll NEVER forget! Two days in the hospital, no arm movement, no muscle mass, wrist curled in, fingers stiff as a board. We were told, “Just keep it close to her body, go home and see your pediatrician. Everything should be fine,” were our final instructions.
Days went by and on our first visit to the doctor, he immediately sent us to a Neurologists (I’m 36 years old and I’ve never even seen a neurologist. This was replaying over and over in my mind.) “I’m diagnosing her with Brachial Plexus and I’m sending you to a Neurosurgeon (Surgeon and my baby in the same sentence this can’t be real) in New York, she needs physical therapy right away and hopefully in three months she’ll start moving it. This was caused during the delivery of your beautiful daughter by mistake.” After two days a week of PT, three visits to New York, and an MRI in New Haven, there was still no improvement! Surgery was our only option! We still didn’t even know what Brachial Plexus Erbs Palsy was! Our physical therapist asked us one day if we were okay because we seemed like we’re just going through the motions. We just believed it would get better. She said, “Let’s talk guys. This is serious. Some kids just get bettter, some need surgery, and some never get better and this may be an issue for life!” To this I replied, “WHAT? You’re telling me a mistake means my daughter needs surgery and may never move her arm again?”
Our Research Begins
My wife and I began to research this thing we both had never even heard of and there were facts that we needed to understand. Here were some facts we found:
*In 2-5 out of every 1000 kids, stretching or tearing occurs during delivery
*More children suffer from this than Down Syndrome
*This occurs 10-20 times more than spinal cord injuries
*This is a lifetime disability with no real information or support in the medical community.
All of this occurs because of what doctors label as a MISTAKE! Mistakes can cost lives, mistakes are excuses; once the root is exposed you’ll realize they could have been prevented. This mistake lead us to New York, New Haven, CT, and ultimately Boston, MA. With one (unanswered) call from the doctor and no call from the hospital, we were left to find a way for Imani to get the best care; this became our number one priority. Thank God my wife was blessed with a great job that offered great insurance because we learned there was no help financially, no support groups, or simple information available in our state.
Support from different communities
Our support and knowledge came from Google and Facebook with communities of parents who had gone through these same battles. After realizing that even with insurance we still couldn’t afford hotels, gas, tolls, co-pays, deductibles, meds (cause after all she’s still a baby having all of the normal baby issues), we had to resort to fund raising by selling custom bracelets and online “begging” – I use this wording because in my heart this is what I told myself I was doing! Meanwhile my wife and I our stressing. I had to go see a psychiatrist and started taking meds because I’m depressed, anxious, and angry. A mistake has cost my beautiful daughter an opportunity to experience life without limitations.
People would tell me she’ll be fine, pray, have faith, trust God, don’t worry, she’s strong, and you have to be strong for her. Meanwhile inside, my heart hurts, my family is stressed out. I thought, “Really, Sebastian and Maritza. It’s not that bad she could be worse,” was our only comfort. Well guess what? That got old very quick and on February 4th our fears were confirmed for the 3rd time, “Imani will not get better without surgery and she must have it done within a 6 week window otherwise her chances of mobility drop significantly”, were the words of one of the best Neurosurgeons for children with Erb’s Palsy in the country. On March 28th the day of surgery, Imani got sick with the “croup cough” and couldn’t have surgery. Now our chances had dropped even more. Finally on May 10th, our Neurosurgeon attempted to fix a preventable action called a mistake.
Looking towards the future
As I sit here with, my daughter laying asleep, and I’m looking at her scars, both my wife and I realize, we have never had her reach out to us with both arms, we may never get to see her crawl, she won’t or can’t hold her own bottle, and that this mistake is the worst mistake I’ve ever been a part of. This mistake has robbed thousands of parents of some of the greatest moments in a child’s life. Yesterday as my daughter attended her 1st birthday party, we had the opportunity to meet another child who was actually preparing for his 3rd surgery for the same thing. His aunt asked him to lift his arm up for my wife and I. It was exciting, awesome ,and perfection all in one; it gave us hope. This mistake is fixable. I then took notice of the young kid running and playing with other kids and all the limitations placed on his running and playing because some doctor in his life made a mistake.
In my 37 years of life I’ve made many of many mistakes. However, I realized every last one of them were not only preventable but they were a result of personal actions. Do we have faith? Sure! Believe? Most definitely! But as I sit here, 3 weeks from Imani’s 1st birthday and live my life, I’m reminded there is a chance my daughter may never be able to live hers without some type of issue. I honestly hate and blame myself sometimes because as a father my main purpose is to help eliminate mistakes in her life and from the moment she came into this world I missed the 1st pitch. As her doctor sits home and enjoys her children being physically able to do what mines cannot, I can only pray one day this doctor and the rest of the medical community understand that their mistake is one Imani and her family will have to live with FOREVER!! They will never know the stress, tears, dollars, energy, time, resources, months, weeks, days, hours and minutes sacrificed so that our daughter will have a great life living with their mistakes.
After all they just happen, right?
By: Sebastian Corbin (Imani’s Dad)
Follow her fight on Facebook: https://www.facebook.com/ImaniFight
Very well said Sebastion! My 4 yr old has a ROBPI. We are followers of your page. Thanks for writing this. Sometimes I have a hard time articulating how I feel. I think you did a great job! BTW…follow my son’s journey at http://www.jadonsjourney2009.blogspot.com/
Hi Kiana thank you so much for sharing your story with us as well.
Kiana thank you for your kind words keep fighting we’re all in this together if you need us we’re right by your side
well written article Sebastian! I have been following u maritza and Imani’s progress silently praying…I believe God is going to completely heal Imani and use your story 4 His glory….
Thanks so much for the positive energy your sending to our cousin!
Thank you so much for you prayers
Your article brought me to tears. I too have a beautiful daughter who has OBPP. It is ridiculous how someones mistake can cause undescribable pain. My daughter underwent her 1st surgery at 9weeks and 2nd surgery at 13months old. She is about to be 2 and I still cry. I feel like vomitting when I see the hospital. I pray for your little girl and mine. You mention that it can always be worse… But it also could have been better. Xoxo Keep fighting Imani.
Thank you Ava for sharing your journey with us.
Thank you sharing!
Thank you so much for your story. I have a 20 month old son with OBPI. He had a nerve transfer surgery at 6 months and they are wanting to do botox along with more surgeries. I feel your pain. I’m going through “one of those days” today. Praying for your beautiful little girl and she is lucky to have a father like you.
Thank you, I hope this will help others and what an aweful thing for your family to endure. http://pinterest.com/pin/232850243207172386/
Thanks for sharing.
Hi Sebastian, thanks for writing this article! I apologize for the length of my comment, but your post got me thinking (and writing).
When I was born, I also suffered a BP injury resulting in Erb’s Palsy in my right arm. I am now 27. It is gratifying to see people talking about this issue because there was SO little information or community for my parents when I was a baby. We were told for years by multiple doctors and therapists to avoid surgical options like the plague. When I was 13, my ballet teacher made it clear that I had no hope of a career. This prompted my mother to find out about the work being done at the Texas Children’s Hospital and by Dr. Nath.
I should note that, partly because of years of ballet classes, my right arm was in unusually good shape for someone with Erb’s Palsy. So, I know there are things I was lucky to be able to do on a daily basis that many others were not/are not able to do. That isn’t to say I didn’t suffer, and Erb’s Palsy certainly caused years of (emotional and mental) pain as I aspired to be an athlete/artist. I didn’t crawl (I did what my parents call “the crab walk,” laying on my side and dragging myself with my left arm), there was no motion in my arm for the first few months of my life, etc. BUT, I was in good enough condition that Dr. Nath and his team only agreed to operate because my life revolved around ballet and there was no way I could pursue my dreams without their help. After 3 surgeries, months in braces, and years of physical therapy, I went on to study dance in a pre-professional program that (although I never had a professional career in dance) dramatically changed my life for the better. That said, difficulties remain. My injuries were too old to regain any nerve function, so surgery basically reengineered my shoulder. I still do not have full range of motion, now that my shoulder is in its socket my right arm is a full 2 inches shorter and generally less robust than my “good arm,” I still have a bit of a “waiter’s palm,” things like water skying are out of the question, and I have to improvise to fix my hair (haha). As I age, back and neck pains in my lumbar and cervical spine have also become more pronounced.
I am telling you all of this because there are a few things I have learned along the way that I hope might bring you and other parents some comfort. Again, it is granted that my injuries are not as severe as what others may be experiencing. That said, I would not trade my “bad arm” for another “good” one. The fact that I couldn’t always do what other kids did was definitely challenging as I grew, and there were many tears and frustrations. But I learned invaluable lessons about persevering, being grateful for and making the most of the abilities I do have (I cannot tell you how many people I have encountered in my life who have sound minds and bodies but give up at the first sign of adversity), and perhaps most importantly, being sensitive to other people’s struggles.
You mention in your article that a parent’s job is to help eliminate mistakes from a child’s life. I tend to agree, but we both know that some mistakes are inevitable. So, there’s another important job that parents have, which you and your wife seem to be executing beautifully: guiding children through the process of dealing with life’s mistakes constructively. My challenges with Erb’s Palsy have taught me that even if we do not get the result we hoped/dreamed/prayed for, perseverance still pays of, often in ways we could not have imagined.
I am not a prima ballerina but I am successful in other ways, and I seriously doubt I would have made it where I am if I hadn’t grown up with Erb’s Palsy. I am currently a PhD candidate in African American Literature. My dissertation is, in part, about how various forms of creative expression can be powerful tools for recovering from trauma and fighting oppression. Doctoral studies are hard intellectually, but I have found that the hardest part is psychological. The work is demanding, the field is competitive, and the pressures are high. Thanks to my brachial plexus injuries, such challenges were a natural part of my life long before I chose to pursue a doctorate. My best work does not always have the results I want. I certainly haven’t steamrolled every boulder in my path. But trying has always turned out to be fulfilling. It has always been worth it.
I have also survived other physical problems that kill plenty of people. Because of an auto-immune disorder (completely unrelated to Erb’s Palsy), I have survived two rounds of acute renal failure and a pulmonary embolism at the age of 20. Thanks to my obstetrician’s mistake, I was mindful of my body in ways I may not have been otherwise—ways that saved my life 20 years later. I also had faith in my own ability to push through fear and pain, which became my salvation while trying to survive life-threatening illness. And this is only one example of the adversity I have worked through since incurring Erb’s Palsy.
So, my point is this. Be angry, be upset, let yourselves mourn. This is, indeed, a shitty situation, and it is very important to let yourselves experience those emotions. They are part of the process. But in your darkest moments, I hope you can find some comfort in the thought that what matters most is not how many mistakes we make or avoid but how we respond to those mistakes. To me, the actions you and your wife have taken to help your daughter, and the concern for her that you express in your post, indicate that you are already wonderful parents. Maybe it’s corny of me, but I have faith that your hard work and Imani’s will come to bless all of you in ways you may have never imagined.
Best of luck to all of you!
–Abigail
Abigail,
I am Sebastian and Mari’s cousin and I have to congratulate you on your Educational accomplishments! Secondly, thank you for posting your experience as a child and adult with Erb’s. I have forwarded this to my cousin and I am sure he will show his wife. It is inspiring to read and I wish you continued success.
Abigail it’s stories like this that give us hope in the mist of a very trying situation. Congrats on your PhD and your accomplishments as a ballerina has shown us nothing is impossible. Thank you for your story, it makes dealing just a little easier.
Thank you for your story Sebastian. You articulated so many feelings I have had stirring inside me for the last two years since my daughter was injured at birth. It is a heartbreaking injury, one that very few understand and sympathise with – including family. It has scarred my heart for life. I relive her birth over and over wishing that I could change the outcome. What is worse is the prospect of facing her doctor in court, lawyers defending that he did not cause the injury. Both him and I know how hard he pulled on her neck. I have learnt a lot in these two years, how to celebrate the smallest of success. A little twitch in the arm might not mean much to some, but to me this was momentous. I suppose the hardest lesson I have had to learn is to stop being so overprotective. Let her try everything (within reason), let her fall, cuddle her and let her try again. She has amazed me so many times on what she can do. I wish you and your family the very best, and of course Imani everything for a beautiful and fulfilling life.
Sarah, thank you for sharing your story with us. I had a Special Education Teacher who had Erb’s Palsy so I knew a little bit about what my cousin was going through but in no way can I say I fully understand what they feel; they are troopers and little Imani is thriving. I am going to talk to my cousin Sebastian about writing up a follow up post to how she is doing today.
Sarah I hope everything goes well with your lawsuit. Unfortunately we couldn’t find a lawyer that is willing to represent us. The doctors seem to “lessen” the severity of the complications during delivery. They are deceitful liars. They knew ahead of time that my son was too large for a natural birth (10 lbs) and still denied me a c-section.
It’s too bad because there are a lot of other services we would have liked to get for him that insurance wouldn’t cover. Maybe I should take my own advice and keep trying. I’ll have to pray on it first. In any case, best of luck with your legal battle.
I have erb’s palsy from birth and I’m 34. I haven’t had any of the surgeries that they have nowadays for this, so my arm is a lot smaller and basically unusable BUT it hasn’t stopped me from doing anything in the past 34 years that I wanted to do. Well, one thing so far….trying to climb a rope….no-can-do….lol.
Your daughter will be fine like me and actually even better off with the
surgeries that they have now. Just make sure to not stress too much around her. If she thinks it is okay, she’ll go on like a normal girl 🙂 …Since this has happened at birth like mine, she’ll never know the difference and she’ll be okay with it. My life has been wonderful; I have a great caring husband, excelled in all my employment, and education. I have been 3 wheeling (sand duning) since I was 5, driving since I was 15, bicycle riding for quite awhile. One thing to be careful with your daughter if she has the same issue I have is not being able to feel hot/cold/cuts/etc. on her affected hand.
I’ve accidentally burned and cut my hand without knowing it without the nerves connected, I don’t feel any of that, only SEE it. Your daughter might not have this issue though. I think each case is different. Just keep it in mind. She’ll be just fine. There is a lot of “us” out there and live just like normal 🙂 I’m know expecting my first child in August so this is in the back of my mind as well.
Oh, one other thing I wish I could do…a simple thing…But can’t do it: Put my hair up in a pony tail.
A lot of other’s with erb’s palsy like me will get talented with putting their hair up by using the wall to “hold” the hair while trying to put it up with the “good” hand. I do this when I put my hair up in a bun. Sometimes I don’t even need a wall, I just do it with one hand. It surprises me when people are so impressed and amazed that I put my hair up with one hand. I don’t notice it and never think about it. Just have to do it. 🙂
Jen thank you for your insight into what happens when an Erb’s child is an adult. Thanks for stopping in and reading my little cousin’s story.
Thank you for writing this. My son has also just turned a year old. You can read our story here. http://www.erbspalsyamothersstory.com God Bless and do keep in touch. xJustine
Thank you for reading about my cousin’s life altering experience Justine.
Sebastian thank you for sharing your story. You’ve pretty much expressed it perfectly. My son also suffered a BPI at birth. There was no where or one to turn to or any resources. I’ve pretty much had to educate myself on everything. I went through depression and anger, sometimes I still do but I don’t let it hold me back for my son’s sake. I continue to push my son’s limits because I refuse to have people say that he “can’t” do something that other kids his age can do. He knows to tell me if something hurts him and so far it hasn’t. I want him to be independent and not to feel disabled.
We’ve also experimented with a DMO orthosis and e-stim and biofeedback. His specialist in Shriner’s Hospital in Philly was very impressed. One thing I’ve always taught him is to never give up. Stay strong and persevere.