Optimist turned Pessimist in 6 hrs

[admin]

I have two children that were obstetrical bpis - one did truly recover and the other did not although he did get alot of recovery. I have one nephew who also completely recovered. I would not be here if my one son had not completely recovered because we would have just gone on with life sort of oblivious to all the problems and concerns for those who are more seriously injured. Please also know that my son who still has the effects of the injury is thirteen and is very happy and can do lots of stuff - he plays piano, and writes with the injured side - the remaining problems are to do with muscle imbalances mainly that lead to shoulder deformaties that make that shoulder unstable and week - but there is so much that can be done to help these ones who don't fully recover now - just keep yourself in the care of a good bpi specialist who knows what should be done and when. My son has a really good life and is happy and some girls at school even have a crush on him he also has lots of friends and does good in school - we just had to get him on a lap top so he could take better faster notes. Up till this year he has enjoyed playing soccer,basketball and even volleyball, However at this point he can't play those sports because it gets rougher as they older and his shoulder get too sore. Whatever the extent of recovery your child can have a really good life - both my sons are happy well adjusted kids the recovered one and the partially recovered one -I know I still grieve his losses but if I look at his life I have to say he really is happy even if he has had to shift focus from sports.My son had nothing in hand arm or shoulder for weeks and now he can lift his arm above his head, to his mouth work the hand -external rotation is an issue as well as supination but three days does not mean all is lost - even if he has some permanent losses you will find your way through and his life can be good even with this sad turn of events you and your child will make it through - hugs.

[Barbara]

I'm so sorry that your son Vance suffered a bp injury. But, please don't become a pessimist because you have read the messages on this board. As some of the others told you, it's way too early to make a judgment on whether Vance will recover in a few weeks or not. Possibly, the best advice is to become knowledgeable (and you already seem to be doing that) about his injury, start physical therapy and range of motion exercises, and see what his arm is doing when he turns 4 months old. My granddaughter was born with a lobpi in 2002 and finding this web site and reading the messages and information here helped her parents decide on a course of action after it became apparent that her injury was not going to recover in a few weeks as the doctors in our area told us. She had primary surgery at the age of 5 months and the mod quad surgery at 12 months, both surgeries at TCH with Dr. Nath. We never felt that surgery was the "last resort." Rather, we felt that with no movement in her arm by the time she was 5 months old, surgery was the best way to go in order to give her the best chance for as much recovery as possible. This decision was against the advice of her pediatrician, her pediatric neurologist, and the therapists in our area who all believed that surgery was likely to do nothing and could possibly make her arm worse. Now, my granddaughter at the age of 31 months, after 2 surgeries, p.t., o.t., aqua therapy, and various recommended activities as Little Gym, swimming lessons, and kindermusic, is doing very well indeed. Presently, she is receiving only o.t. twice a month, and her parents have been using TES as well as NMES. People tell us that they cannot tell anything different about her left arm. We are very pleased about her progress. We don't know if 100% recovery will be possible, but we are optimistic that she will be able to do pretty much anything she wants to do. I hope that this brief summary of my granddaughter's progress will make you felt a bit better.

[Ginne]

Congratulations on the birth of your little boy, Vance!! I am sorry to hear that he was injured during birth and will pray that he has a full recovery.

As almost all the other posters have said, the majority of us post because our children have not experienced a full recovery.

There are those families that do experience a full recovery.

In fact, when I distributed information on BPI thru my daughter's school this past week, I had one of the mothers stop me and tell me her daughter had a BPI from birth but had not needed surgery. The remarkable thing was, I had coached this little girl in soccer the summer I found out I was pregnant and I never knew! She could do everything all the other kids could~ I still don't know what arm was injured!!!!

I know it's hard not to be bitter, angry and pessimistic. I won't speak for everyone, but I believe the majority of us have gone thru the same emotional rollercoaster ride. Heck, some of us (and I am speaking solely on my behalf!) are still feeling this way. This website is the best place to be.It has helped me tremendously come to grips with my daughters injury, and when I read what some of the older OBPI's have done in their lives it gives me tremendous hope and peace. I pray that your son does have a full recovery and that, if nothing else, you can at least find some solace here at this site.

Ginne

[admin]

I first child was born without OBPI, second child was smaller and born with Erbs Palsy, and our third was a c-section so no OBPI.

Our child with Erbs Palsy has been through therapy for 5 years and still is unable to bend his elbow without winging out his arm. When he raises his arms above his head the Erbs arm is slightly lower. Adults do not notice, not even the scar from surgery, until I point it out to them and then they still have a hard time seeing it. His friends still do not know and to some extent our son does not know either.

He does everything he wants to, sometimes differently than other kids but he is very athletic anyway.

I recall the crushing feelings of helplessness and feeling like I had failed somehow to protect my child but at some point I finally accepted there was nothing I could have done to change the doctor's decisions.

There is no way to predict on your own how well your child will recover. You have done a fantastic job in seeking good sound advice from a specialist. Hold onto that because follow up is important and cross each bridge as you get to it... one step at a time. There is always hope and do not get overly discouraged in reading some of the other posts. Please keep in mind that many people like myself, who feel thier child is or has recovered well, do not take the time to post.

I promised myself a long time ago that I would check in every now and then and let new mom's and dad's know that it is not the end of the world as they know it.

Any thing you feel your child should be able to do.... they will find a way to do it.

[admin]

I think what Vance's dad is asking is... "Is it possible to have 100% recovery from this injury".
And that answer would have to be "no, not 100...but one could definetly get into the 90's...and most do"
Here's how we live and personal advise:
High maintenence baby... be very optimistic on the outcome and pray a lot.
Be agressive with your decisions you make for your baby.
Learn all you can about this injury because no doctor will offer you information... they will only answer questions.
If baby doesn't have spontanious recovery by 4 months, go to Texas.
The earlier the baby's arm gets working, the closer to 100% he'll get.
Every single injury is different... unfortunately, we cannot compare.
You are on your own.
Doctors lie...Texas Excluded...( I didn't believe that one when people told me that in the 'beginning of our journey) there are many BPI specialists, we chose Nath because we heard he was the most agressive, and if our baby wasn't going to have surgery...I wanted that info to come from him!
Keep a positve energy flowing towards your baby at all times. No negitive anything near him. No sad feelings.
Bottom line.. get over it and get on a mission to help your son regain his strength and ROM.
If you need to stop crying to get some serious work done... simply do not think of yourself...take 'you' out of it. You can still hyperventalate and ball in private...AWAY FROM YOUR BABY. ( I used to do it when everyone was sleeping)
Strive for balance. Don't be all too consumed... just be aware and educated.
You can only count on you
Our baby's nerves started working at 9.5 mo. no surgery, and she is looking at...I'd say 98%.....she lost 2% for size and length

[rbbp]

Hey my name is salina and i am very sorry about your baby but congrats.
My daughter has robpi she is 4 1/2 months and no bicept return she will get surgery w/ Dr.Hentz nov 3.
Our daughter pediatrics told us if there were no return with in 2 weeks then it would be considerd severe.
Than they go off 3 months.
I myself do not think there will be 100% but you never know god makes wonders keep your head up .
Good luck salina

[katep]

Vance's Dad,

There are versions of this injury that are only temporary conduction blocks caused by swelling that DO fully recover. You won't see many of these posted because the parents may not even be back from maternity leave when their kids recover (within a couple of weeks). A little more severe injury can injure the nerves, but leave the nerve sheaths intact, which may also result in full recovery after the nerves regrow (usually within the first two months). When recovery is delayed more than a month or two, or more nerves are affected, it indicates the damage was more severe, and there are actual obstacles (such as ruptured zones and the formation of scar tissue) to regeneration, or the nerves are detached from the spinal cord. Then you start to get into the realm where surgery offers a better prognosis than natural recovery.

It is important to have a knowledgeable doctor following your child's progress, so that they have the best understanding possible about their rate of return so as to best judge whether or not they may need surgery for better return. But unfortunately, it is a terrible waiting game which might last for weeks or months (or years). I hope that your child has a swift recovery and that, no matter what, you enjoy them as much as you can. Well, it will help when they get out of the "brainstem" phase as we called it in my house...

Kate

[Connie&Andrew]

I just wanted to congratulate you on the birth of your baby. I wanted to add my thoughts about not giving up hope. It's hard to tell what the outcome will be after only a few days. After my son was born I had two friends who told me about their children being injured at birth. Both of their children had complete recoveries. I know one of them very well and the girl is about 10 years old now and shows no signs of an injury. Her mom said she has not noticed anything wrong or different with her daughter since she was about a year old. So it is possible that your son will experience a complete recovery.

On the other hand, though, it's good that you are aware of the possibilities. I spent the first 5 months of my son's life "knowing" that he would be fine, that you wouldn't even be able to tell he was injured. Unfortunately, that wasn't the case. Relatively speaking, he has a moderate injury, he did not need primary surgery, he had mod quad surgery at 2 years old, and now at almost 5 year old, most people cannot tell there is anything wrong, although there are still some things we are working on with him and he never will be completely "normal".

Never give up hope, keep learning everything you can and most of all enjoy your little one.

Connie

[admin]

TO Everyone that has replied to my email - - - - THANK YOU!!! Without all of this advice I wouldn't have known where to begin.

Yesterday Vance turned 1 week and today we went to the P.T., in order to get instructions on ROM exercises. Tomorrow were seeing the Texas ECI for PT help and anything else they have to offer that might help us. We filled out papers for Scottish rights hospital and hope to visit them within the next two weeks. Fianlly we have an appointment with a Neurologist on the 15th. Other than that we're just keeping a sharp eye on any type of improvement.

Thanks again, we'll keep everyone updated and I'm sure more questions will be coming your way soon.

Brad (Vance's Dad)

[admin]

Hi Vance's dad, just wanted to let you know about something I have found to be really helpful in trying to sort through all the information and treatment options out there - I went to a conference by Dr.Pape and she has been working on pulling all of this information together and organizing it to make it easier for families/parents/ therapist and even drs. to have a clear road map that ties together all the vast array of treatments currently available to our kids- she has also laid it out in such a way that you can get an understanding of what the options and treatments are as your child grow ups.She is very good at looking at the whole picture and looking at the whole picture over time.It really helped us to tie it all together and figure out a clear direction for how to help our son 's recovery,. I don'tknow about your ability to travel or where you live but she is- having meetings to teach about the model for recovery for various age groups(I understand she will have other drs and therapists joining together in the presentations)You can find information on the website tascnetwork.net