United Brachial Plexus Network, Inc.

I would just like to echo a thanks for this thread. As a mom who has struggled with this decision, and did ultimately choose one surgery after cancellations...I LOVE hearing the progress of kids that have taken the no surgery route. I LOVE hearing of all the alternative therapies that are out there. I LOVE hearing the progress of kids who have taken the surgery route too... I just love to hear the small (and large) steps toward success and progress that are little kids make, no matter how they get there.

There is so much that is unknown about this injury and we need folks to let us all know what is working for their kids, whether or not it follows the mainstream of these boards or not. We need to know our options and the best way I can think of getting the best options for our kids are from people on this board who have gone down different paths, or the same paths, or any combination in between.

I think the worst decision is one that is made blindly. The best is one that is informed. To me, an informed decision can't be wrong, because only the person knowing it knows all the variables involved and the weight that is given to each variable. Everyone who posts of the outcome of their chosen path is helping everyone else make an informed decision...and thus the right decision for their child.

My dd is 20 months old and has not had any surg. When she was born her head was turned to the side and she had no movement in her bp arm at all. We have done MRI, EMG and therapy (PT/OT) and she gotten a lot of movement in her bp arm. She can do most things with her arm, though she prefers to use the stronger arm. The things she still has trouble with (and that we are working on) are weight baring and protective reflexes. If you have any suggestions on how I can work with her on these two I would appreciate them.

WOW, I haven't been here in a long time! A friend mentioned this post to me and suggested that I read it. I too left this board because of the no surgery discussion. In short i was called a bad mother for not seeing a bpi specialist.

Anyway, my daughter is 2.4 yrs old and has only had PT. It started @ 2 weeks of age and we have only been 6 times total. We do therapy at home and it works. The only thing that she can not do is put her hand in her mouth without raising her elbow and her supination is 90%. To the untrained eye, you can not tell. We work with her daily and she doesnt even know it. Playtime is the key. She does anything that she wants to do.

As for MY opinion on the surgery...my reason for not having it is why mess up what we have? It is not 100% that it will work and I don't see a reason for my baby to go through that. If she wouldn't have such a wonderful recovery, I would have a different opinion. Every parents knows their baby and makes the best choice for them.

I suppose it depends on the severity. My son who is 16 moths had surgery at 71/2 months. I tell you what, it is the scariest thing in the world! You cant explain it until you go through it. I wanted him to heal and I was excited for that and on the other hand I was scared#$##$. I cannot explain how my heart sunk the when they took him away from me for surgery. Reality hit. Just perhaps... He has healed somewhat but I still think of the months that have passed and wondered if he would have healed this far on his own. I know my child has a severe injury but he has come along way by his own doing. I will probably not do another surgery. The risk is not worth losing him over. Kids with this injury are PROOVEN smarter in mathe and science and learning many lessons about people and life. At 16 months my son has the soul of a saint and a heart and wide smile to match. You learn more about yourself and how better to treat others and you will raise your child to turn an eye away from negativity in those who do not understand. JUst love them and be greatful that they are alive and celebrate that and not worry about a surgery that may or may not be the answer. Ask yourself if it worth losing him over. Some people fall into that catagorie and just happen to be the ones who have bad luck.. I did several times good luck. Ann

I suppose it depends on the severity. My son who is 16 moths had surgery at 71/2 months. I tell you what, it is the scariest thing in the world! You cant explain it until you go through it. I wanted him to heal and I was excited for that and on the other hand I was scared#$##$. I cannot explain how my heart sunk the when they took him away from me for surgery. Reality hit. Just perhaps... He has healed somewhat but I still think of the months that have passed and wondered if he would have healed this far on his own. I know my child has a severe injury but he has come along way by his own doing. I will probably not do another surgery. The risk is not worth losing him over. Kids with this injury are PROOVEN smarter in mathe and science and learning many lessons about people and life. At 16 months my son has the soul of a saint and a heart and wide smile to match. You learn more about yourself and how better to treat others and you will raise your child to turn an eye away from negativity in those who do not understand. JUst love them and be greatful that they are alive and celebrate that and not worry about a surgery that may or may not be the answer. Ask yourself if it worth losing him over. Some people fall into that catagorie and just happen to be the ones who have bad luck.. I did several times good luck. Ann

I have to agree that it is nice to see a post broaching the topic of NO SURGERY in a positive light. We too have decided not to have any surgeries thus far, and are still strong in our decision.

Amber is now almost 20 months old and has had wonderful recovery! She is just starting to come past neutral with her supination, and we never thought we'd see that. Just in the past 2 weeks, she's started using her BPI arm to assist with feeding (she actually is holding a spoon in that hand and bringing it to her mouth, although the elbow does push out into the trumpeteer sign). She also has started to grab a crayon in her BPI arm and is interested in scribbling with it along with her unaffected arm. Wow...she's CHOOSING to use her BPI arm rather than just using her unaffected arm. Now if that isn't progress, then I don't know what is.

We're planning on going to Temple at the end of the month to check shoulder formation due to some internal rotation issues, and then will follow-up with Dr. Kozin at Shriner's in Philadelphia the next day. Wish us luck!

And to those parents that are struggling with the issue of surgery or no surgery...my advice is to get educated and go with your gut feeling. You can't be expected to do any more than that. And for those parents who are struggling with a decision they have already made...it's ok to make decisions either way!

Tanya in NY

Ann,

I agree that handing over your child for surgery is one of the most difficult things a parent can do. It's been over 2 years now and I still recall Hannah's face when we handed her to the nurse. It was an utterly helpless feeling. I will also agree that this injury affects a child's heart and soul. Hannah is an extermely loving and giving 2.5 yo. Traits you seldom see in her peers.

However, I disagree with your attitude towards surgery. We put ourselves and our children at risk everyday. The drive to school or daycare is probably more risky than surgery. Life is about taking risks. Our job as parents is to try to determine what risks are worth taking. Everyone has the right to do what they think is best for their child and there is no right or wrong answer. In our case, we wanted to give Hannah the best possible chance at normal appearance and use of her arm. It has been a long road, and we don't know what's in store for the future, but we are happy with the decisions we've made. We do not regret choosing surgery one bit.

Clint

Hi Sara and others,
I have been reading along and have for some reason not posted until today, on this subject. If you have been reading along you already know I am the mother of a 20 year old LOBPI daughter.

When Jill was born her injury was very severe. She had absolutely no movement or feeling. The affected was her entire left torso, shoulder, arm, elbow, hand & fingers.

To date the only medical tests she has had done, relating to this injury, is an EMG in 1984 and again in 1998. Her Orthopedic Dr did x-ray's from time to time to check for any boney problems....and there have been none.

JILL has NEVER had SURGERY. However, back in 1984 I was told by 3 specialists at 3 major hospitals (1 @ Peoria and 2 @ Chicago) that she was so severe that she would never get good enough for surgery or an Orthopedic Dr. On my own, I tried to make an appointment with an Orthopedic Dr. and was denied because I couldn't get a doctors referal.

Well, when Jill was 8 days old following the appt with the Peoria Dr, with good advice from another mother of a 10 year old born with Spina Bifida, I was told to DEMAND THERAPY from a therapist that worked with children. So I did just that. I would not leave the one Chicago Dr's clinic without getting therapy there at that hospital. He kept telling me I didn't need to, and I just kept saying I did need to get therapy for Jill. So he gave in just to get me out of there.

When we had her first Therapy appt. Jill was only 6 weeks old. When we first walked in the door she exclaimed "You can't just let her hand hang down off her wrist like that, she must have it braced. All the tendons and ligaments will stretch out and in the year ahead, should she get any return, there will be a problem if her hand is just left to hang down off her wrist." She then went on to do a visual muscle test, and recorded a "0" beside each muscle on the list. She also said I needed to do ROM and weight bearing to keep her mobile, from freezing up.

Those 3 doctors had never suggested any treatment of any kind, nor any splints. From that day forward Jill has had numerous splints made along the way, for support or to help stop the elbow contracture. I purcharsed her last, full arm (for elbow contracture), JAS splint in 1996 when she was 12. I now can purchase the size small hand/wrist splint off the shelf at Walgreens (she only wears it occassionally when her wrist hurts - which isn't very often).

Also one day when Jill was almost 2 and I went back to the Splint room at the Chicago Hospital for a splint check, an O.T that was working on another child looked up and said "Has she seen an Orthopedic Dr. yet?" I said "No, they won't give me a referral for one" By then Jill had progressed some, and the O.T. wrote down the names of 3 Orthopedic doctors for us to pick from. THANK GOD for P.T.'s and O.T.'s. They and that mom were my angels.

I also went back for therapy training for years and years at numerous different places and did do Jill's therapy nearly every day for 10 years.

Here is what Jill can do. Eventually, long down the road, she did get feeling. During the week of her first birthday she did move a finger (only I could tell) a hair's breath. Jill can bear weight on her elbow, but not her extended arm. She can raise her hand up as high as her forehead. Her shoulder has never dislocated. Jill was always supinated and could not pronate, and now her forearm is frozen midway in neutral. Now her hand hangs down in Ulnar Deviation. She can open and close her hand, however individual finger movement, tho possible, is poor.

During her first few months her fingers drew up tight in a ball, but then released over time. I also researched and found documented in a medical journal published in 1986, how Elec Musc Stim was used on BPI kids in Germany. So I went around to every doctor I knew, showing them this info asking to try this out on Jill. I found one that was willing in Champaign. I used the e stim on her forearm in 1990, to help her hand/fingers open up, when she was only 6 years old.

Now today, as I said, Jill is 20. She graduated from high school with high honors, as an Illinois State Scholar, as did her other 2 sisters, immediately before her. She was born with a natural talent for art, so I took her every week to private art lessons, starting in 5th grade. Jill is a junior in college to be a K-12 art teacher.

Good luck to all of you parents of new babies and young children. At times it seemed like we would never see our way out of this BPI thing....but we did.

Angela Butterfly, thank you so much for taking the time to share all you did. We appreciate it! It is so nice to hear how successful your daughter has been. You must be proud.

Hi again,

I am very proud....but proud of all 3 of my children....they are all 3 in college and doing it well.

I got long winded, but I do think I should also include that Jill was offered surgery on one occasion by her Chicago Orthopedic Dr.

Jill's hand and wrist, tho working some by then, were very weak. So around age 4 he said "when she gets old enough for all the intensive therapy required following surgery, I want to do a tendon & muscle transfer to improve her wrist and finger extension or flexion (forgot which term is correct)to bring her wrist up and fingers stretched out."

All that work I did with the e stim in 1990, in my thinking, was to bypass that surgery. I failed to say before, the e stim also worked in getting Jill to extend her wrist/hand up higher. On her own she could only bring up the back of her hand even with her forearm (like this)_________. However, in order to have a stronger grasp the back of your hand must come up higher, at an angle (like this) /. By using the e stim she gained that ability.

So in 1991 I thought the Chicago Orthopedic Dr. would say "well done, she doesn't need the surgery".....NOT. So when the Ortho Dr. still said she needed the muscle and tendon transfer I severly questioned this. By then he was used to my questions and didn't mind, as he did in the early years. I said "O.K. if Jill does get stronger wrist and fingers, what good will it be since she is always palm up any way. What can you do that will help her go palm down, which is much more functional than palm up?" He said "Oh, the surgery I want to do will make her going palm down even harder. I believe we had better have Jill go for a thorough evaluation with the O.T. about this." AND THAT IS WHAT WE DID. After two, two hour sessions, with both an O.T. & P.T. together, putting Jill thourgh the paces, and watching her perform tasks. I said "Now, for Jill, just how much better than what she can already do, do you think this surgery will help her?" The O.T. said "Well, for Jill, I will now have to say not a whole lot." I said, "That's what I thought." I have been happy with the no surgery decision to this day. At the time Jill was 7.

Actually that same O.T. had also thought Jill should have the surgery, until the eval was over. It was just the usual surgery, and my Jill WAS different. I now understand that most kids are pronated and can not supinate.....my Jill was the opposite.

Also, when Jill was 4, she could not use her fingers and hold her wrist up at the same time. So when I was working with her to pick up objects I had to hold her hand up for her, so she could use her fingers. The splints she had, held up her wrist, but also blocked the use of her fingers. So in the Spring I went to Chicago and asked her O.T. to make a splint for Jill that would hold her wrist up, but allow her to use her fingers, so they could get stronger, as she played throughout the day, following behind her sisters. The O.T. said "I don't think this will work, it is written that BPI injuries can not get better after age 2, and Jill is 4. The O.T. then thought a bit and said, "well I'm 50/50 on it" I said "well, then lets still give it a try." The splint was made, the summer went by, and at the end of summer, we went back and the O.T. said "I don't believe it, Jill's fingers are stronger." SUCCESS

So parents, all of you that have mentioned, go with your gut, you know your child best. It is all true. The Doctors and the P.T's & O.T.'s spend such a short time with your child. Even with the best intentions, they can't know your child as you do. A good Doctor and Therapist will listen and work with you. And sometimes they might start out being a little miffed with you, and you them......but for me most of the time Jill just kept getting better and they LEARNED to work WITH us as a TEAM.