United Brachial Plexus Network, Inc.

Hi there, my name is Melissa. I am the mother of Samantha Jane, shes a big girl, only five weeks old and shes almost thirteen pounds already! She was born at a whopping 10lbs 1oz and because of her size she got stuck on her way out. She now suffers from erbs palsy of her right arm. She has full movement of her hand and wrist and her pediatrician is very optimistic, but I am still worried. It has been five weeks and she has shown little to no improvement and int he hospital they made it seem almost like she would have full movement back by now, it wasn't until her pediatrician told me it could take months that reality set in.

I do range of motion exercises with her daily and she has an appt scheduled with a really good pediatric neurologist in the area. I feel like I should be doing more, seeing her arm just lying there breaks my heart and I desperately wish I could do more for her.

My husband feels slighted and blames the doctor in whole for her injury, I can't help but blame myself. If I hadn't gotten the epidural I think that a simple switch of position could have helped me out alot, but I was restricted to the bed. I feel like my body failed me in a time of need and now my daughter is suffering because I just had to be more comfortable. My heart is breaking, I don't think my daughter is anything but perfect, but I don't want her to suffer now, or in the future.

I didn't know where else to post this, nobody near me knows quite what I am dealing with except for my husband.

Here is my question, with full movement of her hand, are her chances really as good as the doctors say they are that she wont need surgery?

Hi Melissa,

I can't help you with your question, but I wanted to welcome you to UBPN and our message boards. I'm sorry that you needed to come here, but glad that you found us.

You can post on any of the message boards, and there are no dumb questions.

Joanie, 58, LOBPI (left obstetrical brachial plexus injured)

Welcome....I am sorry that you have to be here.

However, all of us know where you are coming from and totally understand. I think we have all blamed ourselves, I know that I have !!!! My son is 8 1/2 nad has had two surgeries, I cannot help you with your question, I will tell you that just about everyone on these boards have been told that their child will heal in a few weeks, in our situatiion it went from 2 weeks to one month to six weeks to two months and then I got some "REAL INFORMATION" People will reply to your original question soon, these boards are kinda quiet on the weekends.

Don't blame yourself, I know it is hard and enjoy your little one, they grow up too fast !!!!

Gayle
Mom of Brandon 8 1/2 ROBPI


Message was edited by: brandonsmom

Welcome Melissa,
I was goingto post similarly to the first two replies saying I cant really help with your question but thats only because every injury is so completely different I dont think that we could give you a complete idea.
I would say with full hand function Smantha Jane has very good chances of a great recovery, but that is just a guess. I know people who have pretty good hand and not much at the shoulder. It all depends on the nerves that were injured and how they heal and regrow.

I also wanted to try and help you to understand that this is NOT your fault!!! Please dont hold that guilt inside you, it truly was not your fault! Your daughter will never blame you for this! What is most important for you to do with her right now it love her and take a million pictures because she wont stay small for long!
Formal PT/OT are really helpful if you have questions. Also you can take Samantha to a bpi specialist if you want their opinion but at this point they might just say wait and see since she is so young. Thats a guess though so dont take my word for it!

I want to wish you and Samantha the best of luck!
Hugs,
Amy 20 years old ROBPI from MN

Hi and welcome to the message boards...

I'm sorry to hear of yet another baby injured but am glad that you have found us. The people here understand what you are going through.

Can't say how much your daugter will gain back, it does depend on which nerves are affected and how much they were injured. I have full use of my hand and wrist and elbow, but my shoulder is quite affected, BUT that doesn't stop me from doing the things I want. I have done ballet, competitive figure skating, swam and lived on my bike in the summer, played the clarinet and piano. I got my BA in child studies and taught pre-K, I also have a PT degree and worked with sports teams and at skating events. I am now n nursing school with one year left to go.

So you see, we who have a BPI are tough and don't let much if anything, get in our way! (I too have Erb's Palsy, in my left arm)

Marieke (31, LOBPI)

Thank you so much for your kindness, all of you. It makes me feel good to communicate with people who understand what I, and what my daughter are going through. It is so difficult to just wait and see. The hospital gave me this false optimism that it would just be okay in a week or two or something. When I took her to her pediatrician he told me he thinks she will heal just fine, but was disapointed when I arrived for her one month appt and there was no real improvement to speak of. That is when he became a little more "real" with me. He is an excellent doctor and just told me that he was sending me to the best pediatric neurologist in the area, and he was still optimistic, but let me know that anything could happen.

Hello and welcome to the boards. I'm sorry you have to be here but welcome, nevertheless. First off, my daughter is almost nine. She weighed 10lbs.1 oz at birth and has a right bracial plexus injury, just like your little girl. At the time of birth my daughter had some finger and wrist movement but that was it.

We also were recommended to a local pediatric neurologist and he told us we would have to wait months to see what would return. I couldn't accept that. I searched the internet and I found the UBPN site and immediately realized we needed to see a specialist that was dedicated to brachial plexus injuries. I think you will find that is what nearly every one on these boards will recommend. You can visit UBPN's medical resource directory by clicking the resources link above. It will help you find a specialist in your area.

My daughter has had two surgeries (a nerve graft at 7 months and a muscle release surgery at 2 years). She is really doing very well, although there will always be complications.

I too had an epidural and always questioned my decision. However, the doctor knew that my daughter was going to be big and I had prolonged labor and nothing was done to prevent this injury or to change the course of the labor events. Also, the doctor never indicated to me that there were risks with big babies and epidurals. I think you will also find there are many people on the boards who had injured children with no pain medication. You will ALWAYS second guess everything you ever did in your pregnancy but the doctors are just as responsible for not knowing how to respond to these situations in an appropriate manner. I think we've all learned the hard way that you can't trust your ob to know and inform you of all risk factors. If you are like most of us, this is the first you've ever heard of erb's palsy or brachial plexus injuries.

Feel free to email me at any time. You will find lots of support and information here. Plus, many wonderful youth and adults who have been injured and will help you realize that this isn't the end of the world for your child -- it just ups their life-challenge factor a bit

Best wishes and congratulations on your new baby!!!

Kim

Hi Melissa,

Welcome to the boards. You'll find an amazing amount of both support and information here - I wish I had found this board when Aria (10 mo.) was 5 weeks old!

As far as blaming yourself, we've ALL been there. That probably doesn't help ease the guilt, but at least you know the guilt is a normal process of this injury. That will get better in time. Hang in there.

As far as Samatha's hand and wrist movement - that indicates hers is not a global palsy - so that is good. However, it does not speak to possible injury of the nerves which control her shoulder, external rotators and bicep - C5-6. Our daughter, Aria (10 mo) has a bilateral injury. At 5 weeks, both of her arms were completely flail. At 5.5 months, she needed nerve grafting surgery on her right arm, but her left arm had recovered to the point where it did not need surgery. (She started moving her left arm at about 2 months, had hand-to-mouth at about 3).

At five weeks, I would not be overcome with worry, but I would schedule Samantha to see a brachial plexus specialist. OBPIs are delicate, intricate injuries and truly require specialized care for the best possible outcome.

We take our daughter to Dr. Kozin at Shriners in Philadelphia, and we love him - but there are many parents here who take their children to see Dr. Waters, Dr. Nath, Dr. Belzberg, and have had wonderful experiences with them, as well. You'll find information about some great BPI doctors on the resources page of this site.

Choosing your BPI doctor is an individual choice, and I wish you great success in this decision. Whoever you choose, this community will offer you support whenever you need it.

Congratulations on the birth of your sweet little girl. You are not in this alone.

mica

Full movement of her hand at 5 weeks old is a very good sign!

Basically, the timing and pattern of recovery is what gives the most information on how significant the injury is. It is unfortunate that basically you never know how "bad it is" until the child starts to recover function, so it is a horrible waiting game. Here is the order of possible recoveries:

Recovery within 2 weeks means there was only a temporary conduction block, a "stinger" if you will, with no structural damage. These children will have complete recovery with no sequelae because the nerves themselves were not structurally injured, only temporarily blocked. These do happen in a lot of BPIs, which is why doctors usually tell parents that the child will recover in a few days. These are the BPIs OBs and delivery room nurses see most often, and they often recover before the child leaves the hospital. So while it really really stinks to not have your child be one of these "mildly" injured cases, I think we need to understand where this perspective comes from. I don't think that OBs and nurses lie on purpose... they just don't know all the statistics.

Recovery by 2 months old means there was damage to the axons themselves, but the "sheathes" of the nerves are intact which allows all the original nerve fibers to regrow back to their original targets. If the nerve sheathes are intact this regrowth takes place within a predictable time frame -- within 2 months. These kids should also have complete recovery.

When function takes longer than 2-3 months to start returning, it shows that there was some permanent damage done to the nerve sheathes themselves. This is where the "every child is different" mantra really is true. Because the nerves are now attempting to regrow through more damage, more things can go wrong as the nerves try to find their way "home". Axons can grow through breaks in the nerve sheaths, creating masses of chaotic nerve tissue called neuromas. Axons can also get "misdirected" and grow down different pathways than originally laid out. This can result in cross-innervation which can take the brain some time to figure out and process. In the face of more damage not all the nerves will find their way to the original muscle targets, and so the nerve fibers that do arrive end up being responsible for larger portions of the muscle. The less axons that are "recruited" to command a muscle, the less fine control the brain will be able to have of that muscle.

Partial function present in most major muscle groups by 3-4 months old usually means there was some damage to the sheathes of the nerves that needed to be overcome, but still signifies a sufficent recovery should happen without nerve reconstruction. These individuals will usually have a reasonable recovery, which may take 2-3 years to fully develop. They usually don't recover all function 100% and may need subsequent surgeries like tendon transfers to help balance function later on.

No function present in certain muscle groups after 4-6 months of age (deltoids, biceps, triceps, wrist extension, elbow extension and hand) indicates an injury which may not have sufficient recovery without surgical intervention to repair the nerves directly.

I hope this helps you and other parents understand the reasoning behind "wait and see" and also why doctors say "everything will be fine in 2 days/weeks/months". Unfortunately, as you wait and watch for recovery, the nature of the injury is that the longer you wait before you see recovery, the worse the injury is. It can really make those days, weeks or months of waiting Hell!

Kate
mom to Joshua LOBPI 3 years old

Melissa,
I'm sorry for your baby's injury. My son was 10 lbs 11 oz at birth and also became stuck. That is the cause of his injury. I got my epidural when i was 9 cm. I blamed myself all the time. If my hips were just a bit wider, if only I had not gotten the epideral, if only i could have pushed harder! I think everybody feels this way at some point. I was told, and found this to be true, that mother's go through the grieving process. And this grieving process is harder than say if a loved one had past because the cause of your pain is there looking at you in the face everyday. My son, Joseph, is 10 months old now and I still have my bad days and i'm sure I'll have many more. But good days are plentyfull too. I was worried about how my son would crawl but he soon showed me that if he wants to move, he WILL find a way and that is how it will be for him. He'll always find his own way to do things. I understand your anguish. I've been there, am there and on some days, past it. Email me if you need to talk. Most important, remember and keep telling yourself, IT'S NOT YOUR FAULT! As far as your question. Every mother I've talked to has been lied to while they were in the hospital. We were told it will heal on it's own. This delays treatment. (or at least it did for my son). OT, OT, OT.... get your baby into Occupational therapy ASAP! Healing time depends on the child, and the injury. Nobody can tell you how long it will take. That's the hardest part. Waiting. Hang in there. Be patient and just love your baby.
Breonna, Joseph's mama, 10 months LOBPI