United Brachial Plexus Network, Inc.

Wow that kinda sounds like a personal ad. I guess I should start from the beginning.

Hi, My name is Shona. I am the proud Mom to 2 amazing little boys. William, who is going to be 2 in a couple weeks and Benjamin who is 5.5 months. They are more then I ever could have asked for. Ben suffered an OBPI. He was 10lbs 11oz at birth and a series of bad medical decisions made by several doctors caused his injury. When we were released from the hospital 3 days after his birth we were given very little information regarding his situation. We were just told that he was fine and that he suffered "a little nerve damage" and that it happened all the time and would clear up in a few weeks. Luckily someone mentioned a brachial plexus clinic at our local children's hospital. I had to track them down myself and arrange for them to see Ben. There was never any follow up from the hospital where he was born.

We live in Toronto, Ontario, Canada and are being seen at Sick Children's hospital. They have a Brachial Plexus Clinic and see roughly 70 children a year with this injury. At our last appointment I was told I should bring my husband with me to our next appointment because we were at the point where we needed to discuss our surgical options. We are going in for that appointment on the 25th of August. I have felt ill ever since surgery was mentioned. What happened to "It's nothing, he'll be fine in a few weeks" I like that answer so much better then what we are facing now. Aside from our hospital visits every 6 weeks we have been taking Ben to a reflexologist once a week. The doctor we see at the hospital says this is a waste of our resources but he seemed to start improving when we started seeing her. He started acknowledging his left side and seemed more comfortable with us touching and manipulating his arm.

In terms of movement, Ben has always been able to move his fingers. In the last 5 months he has developed movement in all his joints. He has some ROM issues and I think the primary concern is his strength. When laying down he has pretty good movement. He even sleeps with his arms over his head. He can suck both thumbs. When sitting up he uses his right hand to support the left a lot and can't seem to move it up to his face very well. In our last 2 appointments he seems to have stopped making progress according to the hospital's movement scale. I do see subtle changes at home.

As parents right now my husband and I are going through a huge range of emotions. We are angry and terrified. We are confused and unsure of who to trust. We don't know what the future holds for our son and are looking to connect with other parents who are going through the same thing or people who have been through it.

Please feel free to connect with me here or on Facebook. You can find me under Shoonieb

Hi Shona,

My name is Anise and I have 2 children, Christopher (5) and Cameron (2). Cameron suffered a brachial plexus injury as well at birth. I'm sorry to hear about Ben's injury, but you have come to a wonderful place for information and support.

We live in St. Louis, but are also seen at Sick Kids Hospital by Dr. Gregory Borschel. Our last visit was in February. He is amazing! Dr. Borschel did our primary nerve graft surgery when Cameron was 3 months old here in St. Louis. You are in good hands there, Dr. Clarke and Dr. Borschel are excellent doctors.

We were very scared at first too when we came to the point of surgery, it is only natural. Cameron has gained a lot of movement that we never thought we would have seen.

Please feel free to email me at stlbpi@yahoo.com

Anise

Hi Shona,

My name is Carrie, and my 1st son Garrett was 12 lbs at birth and suffered a LOBPI. We were also told that is was just a little nerve damage, it was very common and movement should come back after 3-4 months. I think that we are told that so we didn't have a hissy fit in the hospital. Unfortunately, we didn't find out a lot about the injury until after he was 9 months old. All the medical dealings I had were pretty much with the same hospital...so even though I spoke with different doctors...I got a lot of the same answers. I think had they been a little more up front maybe we could have taken some steps to start on the road to recovery sooner. Garrett is now 7 years old, and has had one surgery when he was 4. He has limited use of the arm but it is usable. This site is blessing and I hope that soon any baby or person diagnosed with this will be given this website as a source for information at the time of diagnosis! Surgeries are scary, but if done in time, can mean so much more range of motion for your child.

My son is almost 13 and has ROBPI...has had 8 surgeries to date. Yes, surgery is scary, especially when it is your little baby involved. We put off primary surgery as long as we possibly could. We are glad we have done them, though. Although he has had so many surgeries, we timed them appropriately and he does pretty good with his arm.

We were told the exact same thing in the hospital. Sad, but true...my son ended up having large neuromas on c5, c6, and c8(jump grafts to repair). Avulsion of C7 and scar tissue on T1.

Please know that you have found a great place for support and unfortunately we are all going through the same thing, albeit at different stages.

Surgery is a difficult thing, but try to put trust in your doctors(I know it is so hard to do, after someone injured your baby).
It doesn't hurt to get second or third opinions!!

Enjoy your little one and do those ROM exercises!!

Hi Shona,

My name is Tiffany and I have 5 terrific children. My third child (born 10lbs) who is now 9yrs old suffered a ROBPI and as crazy as it sounds we were told the exact same thing in the hospital. I remember like it was yesterday... I only found this network about 2 years ago and definitely wish I knew about it earier. Not only is it a wonderful resource of information but it is an amazing website for support & encouragement from people that are going through exactly what you are going through. My daughter has not had any surgeries thus far. In fact, she is scheduled for her 1st surgery (Trapezius Transfer) with Dr. Kozin at Shriner's hospital on 8/31. Although, my daughter is what they call "very functional" she is obviously lacking and I sometimes wonder if opting for surgery when she was a baby would have made more of a difference for her. Don't let fear paralyze you! Do your research, get at least 3 opinions, seek support and pray. I believe that if you are well informed, as difficult as it is, you will make the right decision for Ben. Best of luck and you may also reach me on facebook (Tiffany Morris-Kirkland). God Bless!

Hi Shona,
Our stories sound very similar! Yes the doctor made bad mistakes and our children suffer from them!!! My Sofia had surgery when she was 6 months old!! Yes, the word surgery had me terrified!! I was on a emotional roller coaster as soon as it was mentioned. I thought she had made some progress, but then to here the team at Cinn. Childrens say she needed surgery, I was devistated!! I was also told it was just a stretch injury that would heal with time! WRONG!!!! I left the hospital the same way you did, with very little information! My daughter went to p.t. when she was just 1 week old. This has been our life now, going back and fourth to Cinn. for surgery, follow ups and going to therepy every week! My daughter is doing great and has made a tremendous amout of progress since surgery. She had 3 avulsed nerves from her spinal colum!! Yes, it is the doctors FAULT!!!!!!!!!!! Girl, you keep your head up high and this is the time your baby needs you more than ever!!! Always here for you when you need it!! Sincerly, sofia's mom

p.s. you may e-mail me anythime calliesmom.jill@gmail.com

Just added you on FB if that's ok.
-Traci

i was 48 years old and had surgery to remove an extra rib which was causing me a lot of problems with my arms. the surgeon done one side at a time. the right side turned out great, but 2 months later when i had the left side done, i woke up from surgery and had severe pain and no use of my left hand or arm. he told me that he pulled the brachial plexus nerve and that i would regain the use of my arm in about a week or so. after a few days, he told me it would come back in about a month. it is now almost 4 months and i still have no feeling in my arm and very little use of my left hand. now he is telling me it may take up to 18 months to regain normal function. he refuses to even give me an opportunity to ask any questions. i have never heard of this type of injury. i just cry when i hear of a baby going through this. i think that even adults are left in the dark about this. when i go back to my surgeon, i am going to sit in front of the door when he comes in and he is NOT going to leave that room till i get some answers!!!!! i think after 4 months i deserve some answers. and i think EVERY parent should be alerted to this injury BEFORE the baby is delivered.

Dear Jmar,

I am so sorry to hear about your injury. I can't imagine what you must be going through. I do want to make sure that you understand that if you suffered nerve damage that you need to seek a Neurologist (preferable a BPI specialist) as soon as possible. It is so important to your recovery, expecially since there is a very small window of time to try and repair damage (I want to say about up to 6 months past your injury). Please seek care from someone other then the doctor that caused this injury and talk to an attorney as well. I will keep you in prayer. God Bless!

thank you it may take a while to see any one else due to this being a workers comp case for thoracic outlet syndrome this is going to be extremely complicated. and of course my employer is going to fight it and it will be delayed till it is too late to do anything about it. i do have an excellent workers comp attorney already.