Hi Isys mom,
I apologize in advance, I know this might get lengthy. I want to convey the importance of early intervention with a physical therapist because in our case it made all the difference in the world. We also felt like there were SO many questions that we could not find answers for when we asked the drs. and therapists.
Our son, the first baby we had, was born 8 years ago in Chicago suburbs with a right arm injury. It was devastating. We were told immediately by the dr. and staff following delivery, he was over 11 pounds and needless to say got a little "stuck." 2.5 hours stuck, to be precise-miraculously no problems besides his arm injury and my broken tail bone.
So our baby could not lift his arm or move his fingers, his arm was like a limp noodle. We used a safety pin and pinned his arm (the sleeve of his shirt) across his body to his shirt to keep it from flopping backwards and possibly doing any further damage when people would hold him, or pick him up. We were so depressed that we couldn't even bear to explain it to our friends. Our experienced pediatrician readily admitted that she did not have much knowledge on this topic. She went promptly home from the hospital the morning he was born and came right back with all sorts of information...computer print outs and phone numbers for us. She was great! She located a therapist for us before we even left the hospital as well as a neurologist/surgeon who specializes in bpi. For us, there were great feelings of depression and concern and even some guilt.
So, we started taking our son 2 times a week to the local therapists (we had 2 there working together with him) starting when he was 10 days old. We also had a neurologist at a children's hospital that we visited once a month. We did this for 2 years straight and we were very committed to practicing the physical therapy exercises at home. The therapists were much more helpful in the long run than the surgeon/neurologist.
In the beginning, it appeared quite hopeless. We faithfully did the exercises daily, sometimes several times a day and felt like we were just going through the motions with no progress. After 3.5 months of zero arm movement (and I mean a big fat zero), I noticed one afternoon, while he laid on his baby playmat/gym that his fingers were just giving a slight twitch... finally! Shortly after that, and right at four months of age he was able to slightly raise his arm about 30 degrees off of the floor, while on his back. That was all, but it was so exciting and it gave us so much hope! So we continued the exercises and very slowly he was able to show more and more movement daily with his right arm. He was mostly just slightly raising and lowering it.
At our therapy center there was one other girl who was age 3 that had been treated with the same injury. She was the only person we knew and we felt lucky to be introduced to her one day. She walked with a slight bend in her elbow, had difficulty placing her hands palm side up and one issue regarding her feet. However, the therapy clinic considered her quite successful and I remember feeling that if my son could end up as well as that we would be so perfectly thrilled. At that time too, we were just praying for some movement in his limp noodle arm, he was about 1 month old. Besides this one girl, doctors and therapists alike really could not give us much information as to what we could expect. We turned to the internet and of course scared ourselves silly with the worse case scenarios. Don't do that.
We had excellent therapists who worked extremely hard to figure out how to get our son moving in the right direction. It looked mostly like play, but the sessions were long and tiring and the baby really had a work out. We joked that he was the only infant on the block with abs of steel! They did a lot of sitting and placing him in correct crawling position, and emphasized the important of crawling and weight bearing, and symmetry and range of motion. I became quite educated too. They were not afraid to try out some new methods. And we certainly had our share of bumps in the road. You will become familiar with terms like contracture (tightening of the muscles causing the bend in the elbow that is difficult to loosen up.) Supination (palms facing up when the elbows are bent and arms are placed in front of the body.) And shoulder girdle stability. (His shoulder girdle is not the most stable and you can tell if his shirt is off because his shoulder blade wings outwards.)These were the biggest issues we encountered in therapy sessions, especially the elbow contracture. And just when we thought we had everything together and working, well a growth spurt would come along and throw it all off again. The developmental stages and growth do throw some kinks in the progress.
The therapists wanted to use special therapy tape, a sort of splint on his arm and electrical stimulation at one point. Initially the specialty surgeon told us to hold off on the tape on an infant so young. So we did. He felt it could cause a bad skin irritation/infection. I don't remember the age, perhaps it was around 7 or 9 months and we had not seen much progress with the supination. Our options were to use botox that the dr. suggested...or the tape that the therapist suggested. Tough decisions. We went with the tape and a splint, which wrapped around his thumb and up his forearm. So it made it easier for the muscles to supinate when we worked on that. I am sure there is a name for that blue splint we used, but that has escaped my memory. Wait...I found a photo of it, called the McKie thumb splint. He wore it just like you see here in this photo!
http://www.rehabmart.com/imagesfromsp/sp783604L.jpg Well, about a month of taping that arm and lo and behold it worked! (They did a type of taping when he was really young and then this splint when he was a little older.)
He was up and crawling by 8 months! Not too shabby for a guy with a limp noodle arm for four months. Now, we did have some obstacles with the crawling too. He preferred to shift all his weight to his strong arm and scoot on his butt. That was not acceptable the therapists told me. We had to get him in a pattern on his hands and knees...so more work. He did learn to crawl correctly, but he sometimes needed to be corrected when he would slip into the scoot pattern. The therapists put a great deal of emphasis on correct crawling. The weight bearing he had to do on his right arm was especially helpful too.
Next came the idea of the electrical stimulation (called e stim.) That was around the age of one year. He was really developing a bend in his elbow (carrying his arm across the front of his body.) So again, the surgeon advised against e-stim, which back then was not apparently used much with children his age. He again suggested botox to loosen up the tight muscles, thus easing the contracture away. The problem with the botox is that he would have to be anesthetized because they had to inject some deep muscles and second, they were not sure it would work or have lasting effects if it did work. We decided against the botox once again.
And again, we went with the therapists and accepted the e-stim. With more exercises and the stimulation, it worked! It was hardly overnight, it was a really slow process, but his elbow started to straighten out. They measured the contracture after every session, and I believe it started at 15 degrees, soon it was down to nothing...day of celebration at our house!
Now I should point out here that our son did not appear to have nerves that were torn, which is why surgery was not discussed. It appears that the nerves were quite stretched and bruised up, but that is not as severe as being torn, which is why it could repair itself to some degree. It just took a long time, and we had to watch everything every step of the way. It is easy for them to fall into bad habits, moving the arm in an easy way, but in a way that will not give them much range of motion, is what I mean.
At the age of two my son was not doing much talking so we started speech therapy. Most of the drs. and therapists alike said there was no correlation to the injury. However, the speech therapists said that most definitely there could be a correlation between the nerve damage and the gross motor skills, and speech development. I believe she was correct. It wasn't long before she had him singing his abc's. He also started going to an occupational therapist to work on his hand movements and fine motor skills once a week from age 2 to age 3. And we also consulted with a hand surgeon, mainly to discuss the issue of supination. There were times when supination was very difficult and he could not do it without some help.
Now, my son is 8 and he is both left handed and right handed. I think it is a result of the injury. We do have several left handed family members, but I believe that he was born right handed and learned how to compensate with his left hand. Even his teachers have a difficult time figuring out which hand is dominant. Another possibility I consider is that he was born left handed, but the therapists for the first three years really focused on his right, they had him do EVERYTHING with that right hand. So, it is possible that he uses his right hand from time to time because he has learned how and has been encouraged to do things right handed.
The surgeon and the therapists consider him 100% recovered from his injury and there really isn't anything he can't do. There are a few issues that are still apparent, even with his successful recovery, his shoulder girdle is still not entirely stable, his shoulder blade will still slightly wing out -no one notices it except his parents of course! And he really has to work to bring his forearm straight up to his bicep, and supinate (touching his right fingertips to his right shoulder.) But he can do it. He can easily supinate otherwise, and he has no contracture in his elbow anymore.
Furthermore, he is testing for a blue belt in tae kwon do, he can do the best cartwheels and handstands in his gymnastics class. He loves to swim in deep water, he plays baseball on a local little league team, and he rides his bike and roller blades all over the place. He learned how to write cursive this year in school without difficulty too!
And, by the way, he now has a baby sister who was born without any incident and needless to say that her two flailing arms were always a source of great happiness for me...even when she managed to pull on my hair during feedings : )
I shared this story here because his 8th birthday is coming up next week and I remember the day of his birth like yesterday. I have the most empathy for anyone who has to receive news of this type of injury with a newborn baby. I understand how confusing it can be, how difficult to find information on the topic and why you might be looking for some stories to give you some encouragement. This is definitely one of those stories!
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