We rang in New Year’s Eve of 2005 with contractions.  I was in labor with Christopher for almost as long as I was with my daughter, which was about 12 hours.  (And they said the 2nd one comes quicker... yeah right!)  Finally I dilated and thinned out enough that Christopher could start his journey into this world.  My bladder was emptied and his heart rate dropped.  The next thing I knew there were six doctors surrounding me and I was tilted at almost a 45 degree angle downward and pushing to get his heart rate back.  I could see the looks on the doctor’s faces and it wasn't good.  They finally stabilized him and we waited a little longer before delivery.  The doctor said that he was ok, and if he wasn't they would be doing a c-section right at that moment. 

  

     So about a half hour went by and they thought it was ok to start pushing, so we started.  They prepped me for a c-section just in case.  The baby was face down and his shoulder got stuck, called shoulder dystocia.  So the doctor used the vacuum and forceps and we believe the pressure they put on him to get him out resulted in the pulling on his arm that caused the nerve damage to his left arm.  Christopher was born at 4:30pm on New Year’s Day 2006 and weighed in at 8 pounds 3 ounces.

 

     The following morning, they sent a pediatric neurologist in to explain what had happened and had given us a few names of doctors that specialized in what we found out was Erb’s Palsy/”Waiter’s tip”.  Waiter’s Tip is characterized by the arm hanging at the side with the elbow extended, the forearm pronated and the wrist flexed.  I was by myself at this point (visiting hours had not started), so I called my husband and told him to find out whatever he could on the internet about this, since we had never heard of it before. 

 

     Christopher always had movement in his wrist and fingers, which was a good sign, and our pediatricians seemed hopeful.  They had recommended that we see a local neurologist.  He told us that the nerve endings from the spine in vertebrae 4-7 (C4-C7) were damaged.  He said it was too soon to tell to what extent the damage was, so we would have to wait 2 months to see.  If there was no improvement, then he said it would most likely be the worst case scenario of avulsion (separation of nerves from the spinal cord).

 

     Needless to say, my husband and I walked out into the parking lot crying with little hope.  The neurologist did not think physical therapy would do any good at this point, but we and the pediatricians felt that it couldn't hurt.  (If you were told you shouldn't move your arm for 2 months, the muscles and everything would stiffen up). 

 

     The pediatricians were not happy with that diagnosis, so we went for a second opinion that week with Dr. Grossman/Dr. Andrew Price in NYC.  We also started therapy that Monday with Dr. Price’s occupational therapist since Christopher was scheduled for primary nerve surgery with them.  They suggested this based on the observation they did on him at about 2-4 weeks old where his arm just fell when lifted and dropped.  Primary nerve surgery can involve any or all combination of neurolysis, nerve grafts and nerve transfers. 

 

 

     Originally, Christopher was scheduled for primary nerve surgery with Dr. Grossman/
Dr. Andrew Price (they are based out of Miamibut do quite a bit of work in the NYC area) in September of 2006.  My husband and I both felt that the surgery they wanted to do was a bit aggressive.  Before making such a major decision, we decided to get more opinions and see what other options were available – thus we began our East Coast tour of doctors.

     We saw Dr. Peter Waters at Boston Children's Hospital whom we liked.  He did not believe that primary surgery would be in Christopher's best interest, especially since he had movement in his fingers.  Water's approach was to do aggressive OT and PT and he would re-evaluate him around the age of 2 years to see if he would need secondary surgery.  My husband and I thought 2 years was an eternity to wait at that point, so we went to see Dr. Alan Belzberg at Johns Hopkins in Baltimore, MD.

     Dr. Belzberg is a neurosurgeon whereas Dr. Grossman/Dr. Price, Dr. Kozin, Dr. Waters and Dr. Nath are all orthopedic/plastic surgeons.  He also has a team consisting of an orthopedic surgeon (Dr. Crawford) and a plastic surgeon (Dr. Redett).  We felt that if a nerve specialist said Christopher would need primary nerve surgery, then it was inevitable.  What we liked about Dr. Belzberg was that he was very patient with us.  He sat and observed Christopher for over 2 hours, answering each and every question, concern and worry we had.  He also had a multi-step game plan, if the first step did not work, then we would go to plan B, and if that did not work, plan C, etc.  In fact, he is still tracking Christopher’s progress today.

     Dr. Belzberg also felt that since he had movement in his fingers nerve surgery was not advisable.  He told us about the “cookie test” which would verify if primary surgery was necessary based on elbow flexion.  The “cookie test” is where you give the child a cookie while sitting.  If the child can get it to their mouth with the elbow held at their side and bend their neck less than 45° to get the cookie to their mouth, then elbow flexion is deemed adequate and surgery is not needed.  If Christopher passed it, then he was out of the woods as far as primary nerve surgery went.  If Christopher had failed it, then this was an indication to do primary nerve surgery to repair the damaged brachial plexus.

     Dr. Belzberg also suggested Botoxing the strong muscles (the triceps and pectoralis major muscle) to give the biceps a chance to strengthen.  So we did this in August of 2006 (Christopher was 8 months old).  We gave Christopher cookies like they were going out of style, and whether it was coincidence or the Botox helped, he passed the “cookie test” and avoided primary nerve surgery, but we still had a long way to go.

     We then had to deal with the second part of Christopher's injury which was a subluxed humeral head (the top of the top arm bone) and glenohumeral joint dysplasia.  From what we saw on the MRI’s done at 4-6 weeks old, Christopher’s shoulder was pretty bad.  Dr. Belzberg had said that the injury was now out of his realm since it did not involve the nerves.  Based on suggestions from Dr. Belzberg, went back to Dr. Waters, Belzberg's plastic surgeon - Dr. Redett, and Dr. Scott Kozin.  Dr. Waters wanted to wait still as did Dr. Redett.

      We then met with Dr. Kozin who is out of Shriners Hospital in Philadelphia .  A few things came into play when we were making our decision in which doctor to use. 

     One, Christopher’s care would be free because it is a Shriners Hospital .  Shriners Hospitals are free to children under 18 years of age.  Two, Dr. Kozin in Philadelphia is geographically closest to us (we are in northern NJ) and if after surgery we needed something, we could make it in a drive.  Three, based on Christopher's MRI, Dr. Kozin felt that his shoulder was not going to get better on it’s own, no matter how much therapy we did.  He suggested not waiting any longer to intervene, which is also how we felt.  These are some of the reason why we chose Dr. Kozin at the Philadelphia Shriners.  He also spends a lot of time with you answering all questions and concerns, and he wants your child to have the best possible recovery.

       In May of 2007, Christopher had an ACR - anterior capsule release. They made an incision to release the anterior capsule and partially the subscapularis tendon.  This was done basically to put his shoulder back into socket.  He was in a cast from the waist up for about 4 weeks.  When we returned for cast removal and the cast was removed Christopher raised his arm higher than we had ever seen, although still not totally upright.

     At the 6 week post surgery follow-up appointment, Dr. Kozin felt that Christopher was still tight in the shoulder area.  He felt that he was still lacking a bit of external rotation due to strong internal rotation.  He did not want to lose any benefit of the surgery, so Dr. Kozin suggested we botox his deltoid, subscapularis and biceps, I believe.  We agreed that this was worth a try.  It took about 3 weeks for the botox to kick in, and after aggressive OT, Christopher was missing only about 20° in external rotation and had improved his supination tremendously.

     Around the 1 year post surgery mark (May of 2008) our OT, Cindy Servello said that we were still missing about 15° of external rotation.  She felt that one more round of botox to the same muscles as before may help.  She e-mailed Dr. Kozin to suggest this and he agreed.  This would buy us more time to strengthen the external rotators.

     Christopher is making small but positive strides with this round of Botox – his supination is excellent, almost to full supination and now we just have to work with him reaching behind his head.  He can get to about the middle top right now.

     We have been fortunate and blessed to have found Cindy Servello – Christopher’s OT.  She specializes in Erb's Palsy/Brachial Plexus injuries and has a great rapport with Dr. Kozin (as well as Dr. Nath and Dr. Waters).  If she has any questions as to why Dr. Kozin is doing something, or she has a suggestion, she is able to communicate readily with him.  She is more than just a therapist in our eyes, and is willing to help anyone out.  She is truly Christopher’s “angel”!

     As far as therapy goes, I think it was somewhere around 21 months that we scaled back from OT/PT three times a week to one time.  We qualified for Early Intervention, which is state sponsored therapy.  I know NJ and NY participate in it, but I am not sure about other states.  Currently, we go once every two weeks for OT.

     A lot of what I do with Christopher is to give him stuff to reach up for, like a magnetic easel.  We do “head, shoulders, knees and toes”, and I stretch/massage him daily for about five minutes.  I also feel that it is key to let the kids do most of the work.  That is how the muscles strengthen – by usage.

     If you look at Christopher today you would have a hard time telling he was injured.  His shoulders are very symmetrical.  He does not really have a sloping left shoulder and his muscles are pretty even.  He did wear an arm brace at night to keep him from bending his elbow, helping him to sleep in a more neutral shoulder position.  He figured out how to pull it off, so at that point, we no longer used the brace.

     Christopher was very delayed in crawling and walking due to his injury because he needed to push himself and he was unable to do this with his left side. He started to walk around 20 months or so, and has been running everywhere since.  His speech was also delayed, but at 2½ he has come a long way, even with a little bit of speech therapy.

     We’ve still got a ways to go, but we can see tremendous improvement from when he was born and we’re extremely hopeful that eventually this injury will be undetectable.

    Please feel free to write or call..