United Brachial Plexus Network, Inc.

Hi! My name is Veronica, I am a new member. My daughter, Olivia is almost 3, and has a bilateral OBPI. Her right arm is much better than the left. I have seen lots of posts, and everyone says right, or left OBPI. I have met Mica, whose daughter Aria (6 mo) is also bilateral. I am wondering if anyone else out there is dealing with a bilateral injury. I would love to compare notes.

One problem that I have is that since Olivia's left side is so much more severely injured, it seems like we look so hard at the left we miss the right. I hope this makes sense.

I hope someone can shed some light on this for me. I'm looking forward to your posts.

Thank you
Veronica
Mom of Olivia, 34 months, bilateral OBPI

Veronica,

It's Mica, again. I wanted to post this question under this topic in case there are any other bilateral OBPI parents out there who could also answer.
Because Aria's injury is bilateral, her doctors are unsure how to answer our questions regarding possible arm length discrepency. While this is, of course, NOT the biggest (nor the most important) hurdle Aria will have to overcome from her OBPI (not by a long shot!), we also don't want to pretend it won't matter to her. At some point, it will.
This is a personal question, and I will completely understand if you don't want to answer it - but have you noticed a length discrepency in Olivia's arms? I am asking you simply because Aria's doctors say children with bilateral injuries might have limbs equal in length, or they might not. There are simply not enough cases for them to be sure. Everything is so unsure with a bilateral injury!!!
Another question we are struggling with is the protective reflex. Children with OBPI's often lack the instinct to throw out their affected limb to brace their falls. Since Aria's injury is bilateral, does this mean she might not throw out either arm??? Or, will she throw out the less affected one? (We would appreciate your experience here, as well.)
To answer your earlier question about making sure you don't forget about the less injured arm - we just plan designated times to work her less injured arm. We'll take a 10-15 minute block of time a couple of times a day and make sure we really concentrate on her better arm. We also have special activities where we encourage her to work both arms together.
My husband made a little desk for Aria and we play a game where we encourage her to scoot a little toy from one side of the desk to the other - which requires her to use both hands individually, as well as meet at midline to pass the toy.
Thank you, Veronica.

Mica

Mica,
First, I cannot think of any question regarding our daughters that I would be unwilling to answer. I only wish that when Olivia was 6 months old I had found someone to answer my questions. Instead, all I got were lies from doctors, hospitals, pt's and ot's- all saying that she would 'outgrow' this. I dont promise to tell you everything you want to hear, but I will tell you the truth, as I know it from my own experiences.

Anyway, to answer your questions. We are very fortunate, and we have worked with Olivia a lot. I do not notice any difference in her arm length. As a matter of fact, to look at Olivia now, you would not notice anything extraordinary about her. (except how beautiful she is- but I am only a little partial- LOL) Her arms hang in a fairly natural position, especially since the triangle tilt. To watch her move, however, you can see the results of the injury. I am happy to email you a picture if that would help- after all, a picture is worth a thousand words.

As far as reflexes go, don't worry too much. Olivia has a brother that is 13 months older than she is. As you can guess, her reflexes are tested often. Last spring, before either of Olivia's surgeries, she was on her bike in the garage. Her daddy and brother were out riding bikes on our quiet dead end street. We have a steep driveway- and it was one of those accidents where you can see it happen but you can't stop it. Olivia's bike got out of control, and she fell down our driveway. At the bottom, where she landed, she instinctively threw out her right arm. She fell on the pavement, and scraped up the left half of her face and body. She definately has reflexes on the right side (the less affected side).

Your daughter will adapt and learn to protect herself. It's amazing how resiliant they are. Please feel free to ask any other questions you may have. Also, good call carving out time each day to concentrate on Aria's left arm! Kudos!

Thanks
Veronica
Mom of Olivia, 34 months, bilateral OBPI

Veronica,

Hooray for Olivia!!! It sounds like she's really recovering well! That must be such a wonderful thing to see! As far as growing up with a big brother, I grew up with two. You're absolutely right - her reflexes will be tested - a lot!!!

Thank you so much for answering my questions. I hate sugar-coated stuff. So, the truth sounds wonderful to me! Just like you, until we found Dr. Kozin, other doctors and therapists had told us Aria would be just fine within 90 days. (It amazes me how little the medical community knows about the long-term devastating effects of OBPI!)

I hate to sound clueless, but what is the triangle tilt surgery? It sounds like Olivia has had some very successful surgeries. Would you tell me about the ones that followed her primary surgery?

You also mentioned that you could see the results of her injury when she moved. Would you elaborate on that? Is there anything in particular my husband and I could begin working on now?

Also - there is no question I am unwilling to answer about Aria's injury, either. We are all here to learn from one another, and to help one another. Please, feel free to ask anything you want.

Mica

Mica

In February of 2006, I finally found Dr. Nath. Let me tell you about how wonderful this man is. He performed the mod quad on Olivia May 11, 2006 and the triangle tilt on November 15, 2006. I could try to explain the triangle tilt, but it would be easier for you to just visit the website:

http://www.drnathbrachialplexus.com/

Dr. Nath has the Triangle tilt patented, so you have to go there to get that surgery. Olivia has actually never had primary surgery. She went from about 30% function to about 65% with only the 2 secondary surgeries.

What I mean about watching her move- well, that is difficult to explain. You especially notice the injury when she reaches above her head (she gets about 110 degrees activly, 180 passively) or supinates. Or when she tries to pull her pants up (oh the joys of potty training- watch out for that one!) It is difficult for her to get her panties up and down- they are so close to her body. As much as I hate to admit it (Ive never said this to anyone except my mother and husband- but you really deserve to know) when she tries to pull her pants up, she holds her hand and arm so strangely- it almost looks claw-like. It ripps my heart out to watch her struggle with everyday tasks like that. Also, if you ask her to use her left arm, she will do it, but it is slower- almost like she is really concentrating on getting her hand to that particular spot.

I hope that I am not scaring you- my daughter is beautiful- and strangers do not notice her injury unless they really pay attention or notice her scars, or I tell them. But I am trying to be as up front as I can about everything. We deserve the truth!

Also, I have a question for you. Do you struggle with guilt or depression? I know I do. I have always been a forgiving person- never hold a grudge. Until now. Now I find myself angry- and just trying to turn that anger into something productive.

Hope this helps
Veronica
Mom of Olivia, 34 months, bilateral OBPI

Veronica,

Oh, thank you so much for your honesty!!! You are not scaring me in the least. I am a planner by nature. It helps me to know the reality of things.

About the guilt - absolutely. Some days it is difficult to just breathe in and out. Some days, my beautiful little girl smiles at me and I think, "I'm so sorry I could not give birth to you safely. I'm just so sorry." It isn't fair - they are so innocent...

My family is really trying to help, but in kind of an opposite way than I need. They are good at telling me this is not my fault (it really isn't any of our faults), and they are good at encouraging me to talk with a therapist about my guilt and depression regarding Aria's injury. However, this is something I am really going to have to work out through prayer and with time.
Mothers, I believe, are scarred from this in a way different than fathers and other family members. It's not necessarily that we love our children more, because I can see how very much my husband loves our little girl. The only thing I can think of is that we are the only ones who actually felt our little girls using their arms. We felt them punch their little arms against our bellies when we were pregnant, and we felt them do this right up to the point when they were injured. That gives us a much fuller reality of what was lost.
You are certainly not alone in your guilt. Most of the mothers here probably have some level of post traumatic stress, if we are honest.
I know you've heard this before, but you did not do this to Olivia.

Mica

I'm not sure what Dr. Nath is telling parents, but a patent on a surgical procedure means nothing in the United States. While Congress has not gone so far as to exclude surgical procedures from being patentable, they have made it meaningless to do so by passing Public Law 104-208 in 1996 denying patent owners the right to enforce such patents.

http://www.physiciansnews.com/law/1097meyers.html

Unless the procedure uses some patentable piece of equipment or tooling, it CAN NOT be exclusive to one surgeon. Surgical procedure and therapy patents (except where using a patentable device or tool) are not allowed in Europe, either.

The American Academy of Orthopedic Surgeons has gone so far as to assert "that it is unethical for orthopaedic surgeons to seek, secure, or enforce patents on medical and/or surgical procedures. The granting of Medical Procedure Patents poses a serious threat to medical advancement, medical education, and patient care, as well as contributes to the spiraling costs of health care." A more elaborate explanation of and reasoning for their stance can be found here:

http://www.aaos.org/about/papers/position/1131.asp

The American Medical Association holds a similar position. It is not in the interest of medical advancement and knowledge to patent or otherwise attempt to exclude other doctors from treating patients in the best possible manner available.

I'm sorry to interrupt your conversation. I think it is important for other parents to know that a patent is *not* what is keeping other surgeons from performing the Triangle Tilt and that there is significant consensus among the medical community that such patents are not in the interests of medical advancement or patient care.

Kate

Hi! I agree that a patent on surgery does not seem to be in the best interest of the patients. That is what I have always thought. Honestly, I'm not even sure where I heard that the surgery was patented- I think it was from the hospital where the surgery was performed. We have been fighting with our insurance company (watch out for this one Mica!) about so many things regarding Olivia's injury. It took me 8 months to get my insurance to pay for botox! They said it was cosmetic! (Like I really want to shave years off my 2 year old's face!- LOL). Then we have argued about covered charges, if the surgery was 'elective' or not, usual and customary fees, the list goes on and on! So I have spoken with so many people about this surgery- I cant find another surgeon who does it- that I dont remember who I've heard what from anymore.

Dr. Nath is a great surgeon- he has helped my little girl so much. After years of countless doctors saying they couldnt help- he offered hope. Her improvements have been significant. I highly reccommend Dr Nath.

Mica- I do know in my mind it was not my fault (as I am sure you do). But I keep thinking 'I am her mother- I was supposed to PROTECT her. This was not my first delivery- I knew it wasnt going right. Why didnt I stop it?' You are right though, no one understands like a mother. My husband loves my children so much, but he does not have the guilt I have. My mother- she doesnt have the guilt I have. No one does.

I have also spoken with a therepist, and it does help (so does the lexapro). The guilt is bad enough, but I also have ANGER. I am so mad at the doctor and hospital. Mad because it happened, mad they lied to me, mad because they tried to make it my fault. (After she was born, they told me I had gestational diabetes- the test results were negative during my pregnancy, and our blood sugars were fine, but they could tell 'just to look at her') And, as childish as this sounds, mad becuase the doctor doesnt even have the decency to ask how she is doing when he sees us out.

I am trying to deal with all this, but every time I see her struggle to do something- she is 2, she shouldnt have to struggle- it breaks my heart. I only hope that someday I can accept this and make it productive the way Francine Litz has.

I know what you mean about your parents trying to help but dont really. Mine are the same way. Sometimes I just want to cry- to feel bad, and my mom is always telling me not to worry about what hasnt happened yet. But I need to prepare for the worst, and hope for the best. I know they are trying- your family is too- but since they dont understand they cant really help.

I encourage you to contact Dr. Nath. (1-866-675-2200) The surgery is expensive, but well worth it. He has helped us so much.

Veronica
Mom of Olivia, 34 months, bilateral OBPI

Veronica,

You are so brave in your honesty... I admire you for that. Yes, I struggle with anger, too. I'm an artist, and I've put a lot of that angry energy into my art - not so much that I'm creating "angry art", but just that I'm funneling that high-charged energy into creating something better. It doesn't always work - I spend a fair amount of time crying and screaming into pillows - but I'm trying.

My brother committed suicide about 4 years ago, and through counseling I learned that the best way to heal was to allow myself to feel all of the emotions associated with that event. If that meant sorrow, anger, guilt...whatever, then I needed to be allowed to feel those things. (That, of course, did not mean allowing them to take over my life, but I can tell from your posts, this is not what you are doing!) It is healthy to feel.

I refuse to defend my right to grieve what happened to my child. Period. If I process that differently than my family, then we all have to learn to accept the way one another processes these strong emotions. (This is, of course, much easier said than done!) We should not place expectations on one another and say, "This is not how you should be handling this. You are doing it wrong." In my experience, when I have allowed myself to just feel what I feel, I arrive at a healthy emotional place much faster.

I realize that what happened to my daughter is strikingly different than my brother's suicide, but I am going to handle the emotional healing in a similar manner. I'm just feeling what I'm feeling. It's been six months since her injury, but I'm already in a much healthier place.

Don't beat yourself up about the anger. I believe there would be something wrong if we were not angry. Our daughters were severely injured - that's worthy of anger. And, the fact that the medical teams involved are either dismissing it as a "non-issue", or forgetting it happened alltogether is a slap in our faces. No, much worse - it is a slap in our daughters' faces. It is okay to be angry about that!!!!! However, I'm coming to the realization that those people have no more power to hurt my child. They are only as important in our lives as I allow them to be. Now, I only want to make sure they understand so that they won't do it again!

I'm in the process of writing a letter to the group who delivered our daughter. I'm going to let trusted friends read it, to make sure it is devoid of blame or rage - I'm sure it will take several drafts. But, I just want them to understand how devastating this injury is. That will be closure for me. I can't go back and change what happened, but I can do my part to educate those who can prevent this injury in the future.

Be kind to yourself. You are not a robot - you are going to feel things. Don't apologize for that, or place expectations on yourself. We will all heal in time.

I hope this helps...

Mica

Mica,

Chatting back and forth has helped me so much. I hope it helps you too. You are so early in this process, yet you seem to have such a good grip on the reality of it. I admire the way you give yourself permission to grieve. That is what I need to do. Allow myself to feel the way I feel. You are so right.

I have been thinking back to Olivia's infancy- and I have thought of more to tell you. Olivia did not talk until after her first surgery at 25 months. Not a word. Don't let anyone tell you that your child is not in pain if you believe she is. Olivia didnt sit up on her own until late- about 9 months- because her balance is off. Also, she didnt crawl ever- she tripod-ed at 12 months. She didnt walk until 17 months. My PT and pediatrician said these delays were because of her balance. Also, especially this time of year, Olivia's arms get VERY dry. I buy estee lauder or clinique lotion to rub on her arms twice daily. If I dont, her skin will crack. Watch out for dry skin- especially as Aria grows and you arent putting lotion on after every bath anymore.

As I think of more (I am sure I will) I will post those too. How is Aria doing since her primary surgery- that was 1/25 right? When will she get her splint off? Let me know how she is doing. I have not dealt with primary surgery, so I am interested to see how she progresses.

Veroncia