United Brachial Plexus Network, Inc.

My daughter will be 2 next Sunday and is surgery free to date. At my delivery the dr tried forceps and a vacuum to extract her and when that failed she yanked her out violently. She only had minor finger movement the first few months, and then around 4 months she regained bicep movement. Today she can raise her arm and even touch the back of her head. She has minimal elbow contracture and some scapula winging, both are not apparent to most people. She has had PT since 2 weeks of age which has really helped. Her therapist has done a lot of taping on her and just recently ordered E-stim for her. So my suggestion is to keep on top of it, make sure you find a PT who specializes in brachial plexus injuries and to realize that no matter what the outcome is, your daughter is special.

I just wanted to let you know that most parents who come to this board are the ones whose children have more severe injuries. Most parents whose children have had good recovery do no need the ongoing support that parents with children with severe injuries do. My 3 1/2 year old son has a very severe injury with 4 avulsions and we are looking at his 5th surgery soon. I come here almost daily so I don't miss anything new that might be of help to him. I do have to tell you that my son has amazed everyone with his personality and the way he figures out how to compensate on doing things. He even uses his right foot and toes when needed! After his tramatic and violent birth, my son had no movement at all until about 9 months after his first surgery. My advice would be to see a BPI specialist as soon as possible. I am so sorry to hear your child is injured and I hope with all my heart that you are one of the lucky parents that don't have to come here often. I will be praying for you...blessings.

Hi, Steve. Wondering what kind of recovery your child will make is every parents question. Let me just say I'm sorry that your child sufferred this injury and that you've come to the right place for support from other parents and BPI sufferers.

My daughter was born with ROBPI. She always had finger and wrist movement, but was flail in the rest of her arm. This was due to my midwife pulling on her head during shoulder dystocia and not encouraging position change before pulling more and more.

We did not see any bicep function, which was only a flicker, until about 4 months of age. Bicep function seems to be the indicator for most specialists as to what the outcome of recovery may be. Keep in mind that sometimes your child will plateau then possibly make more recovery after that period.

We started PROM exercises at day 10 per our instructions, and did them multiple times per day. We saw a terrible orthopedic doctor, then an okay orthopedic doctor, and now have found a wonderful BPI Specialist. That's the key...BPI specialist. You wouldn't let your general practitioner do coronary artery bypass surgery and follow-up care by themselves would you...so it's the same philosophy for BPI...see the best. Who is the best in your opinion is something that you'll need to figure out for yourself as everyone on here has differing opinions for different reasons. Personally we see Dr. Kozin at Shriner's Hospital in Philadelphia and have consulted with Dr. Waters in Boston, but there are other fine BPI Specialists in the US as well. Do your research.

So, back to the recovery. We've continued PROM, got into Early Intervention, do OT and PT through EI and now aquatic therapy on our own 2/week with an OT. I believe the aquatics has helped tremendously with our daughter's ROM and function. Since our daughter, Amber, is almost 2 years old, it is very difficult to get the PROM in each day as she doesn't like sitting still and would rather be doing something fun. So the aquatics helps get the PROM in more often and she's looser after that therapy for us to be able to do PROM. We also have her use a McKie Supinator splint to help her supinate, which has worked well.

To this date, she has had no surgery, but we are in the process of scheduling an anterior capsule release with Dr. Kozin due to loss of external rotation and subluxation of her injured shoulder.

My daughter can reach her hand up high (she does bend at the trunk to compensate), she can touch the top of her head but not the back, she can now come just past neutral for supination (turning the hand palm up), she has no external rotation, she has the trumpeteer's sign (elbow sticking out the the side when lifting the arm, kind of like a chicken wing sticking out), has a small elbow contracture, and is internally rotated with a weaker arm. That said, most people don't at first even notice she has any injury. Not until she starts running around (with the elbow sticking out and internally rotated) and does everything with her left arm do they notice.
My rambling means that there are so many different paths for recovery. Get to a BPI specialist, do the PROM exercises, get into Early Intervention, and do your research. Take advice from everyone with an educated mind because there is good advice and bad advice all over the internet and in the medical community, as I'm guessing you've probably already knew.

Good luck to you.

Tanya in NY

PS. Get on the mailing list for the Outreach magazine published by UBPN. It's a great resource.

Hang in there, there are alot of success stories. My daughter will be 2 on monday and she has had great recovery with no surgical intervention. AT birth she could move her fingers and wrist and shrug her shoulder. She started moving her arm at about 9 weeks and got her hand to her mouth sitting up by 3 months. Those first few months are the hardest! She has been in OT since she was 5 days old. Most people dont notice a difference in her arms. She can do everything but when she gets tired she compensates. She is still improving daily, she can probably suppinate about 75% now and she is not as internally rotated. As everyone has said, please see a BPI specialist! Good Luck

Hi Teresa,

I tried to send you an email but was not successful. What is your email address. Thanks for posting a response to my question

Hi Steve,
My email address is teresamharrington@netzero.net Even though I've been a member of this board for two years, it still posts me as a guest. I'm probably doing something wrong. Feel free to email me anytime with any questions or if you just want to talk.

Teresa

Steve
Glad you found your way here - I hope your daughter makes good progress- let me know how she get ob won't you!
kindest wishes to you and the family
Karen Hillyer
Erb's Palsy group UK

Our son was born with Erbs Palsy and had surgery at 5 1/2 months old at TCH.

We sent them a tape to see if he was a good canidate for surgery and have never regreted the decision to have the nerve by-pass done.

Our now six year old son swims, does karate and gymnastics lessons, likes t-ball but spends more time talking on the field and claims that he caught the mother of all fishes.

He does not have one arm shorter than the other and experiences no pain in his arm. He has a very faint scar on his neck. People do not notice unless I point it out to them. He cannot bend his elbow without winging out his arm and when he lifts both arms the affected arm is slightly lower than the other but if you would ask him what arm was injured chances are that he would come ask me before he gave you an answer because he forgets.

He spent five years in therapy staring at a week old and is evaluated periodically by the school OT. Last year he used a slant board to help him write.

It is a huge adjustment to make mentally when your child is born with a disability because there are accommodations that you have to make but please do not fail to recognize that the kids do lead normal lives in almost every way.

A tip when your child starts walking is to hold their hand when you are on pavement because when they trip and fall the arm cannot save them from getting a scrape on the face. It is a temporary problem like most things are when it comes to asking, "How will my child do ...." They will figure it out.

Steve
I don't know if you would call my recovery great but I assume it was good. I am and adult/obpi a wife a mother a grandmother. I feel I have accomplished as much as anyone who is not bpi. I raised three children I worked and have been active in the community all my life. I have a zillion hobbies and interests.
My arm was injured but I am still a whole person and never thought of my self as disabled. The first time someone said I was disabled I was so upset, I was about 18. I got very angry and told him off in no uncertain terms. "I am not handicapped my arm just sticks out a bit." Then I wondered why I failed my first driving test... LOL... I passed a week later with a different examiner who never mentioned my arm.
Your child will have, for the most part, a normal life but getting to that point requires tons of work on the part of parents and child.
I hope this helps you at this time I am sure you are worried and fearful of the future. We are tough little ones and learn early in life to preserver and be persistent at all we do. That part of obpi personality served me well over the years.
I have been very blessed I made many obpi/adult friends here at UBPN. I notice we all seem to have good productive lives. One other important characteristic I noticed among the group of adult/obpi posters, we seem to have developed very strong sense of humor and learned not to take ourselves too seriously.
Don't forget to enjoy this precious new baby time goes by so fast and they are babe's for such a sort time.
Kath

HI, ISNT IT IRONIC HOW MOST OF OUR DELIVERIES SOUND SIMILAR? PLEASE SEARCH OUT A PEDIATRIC NEUROLOGIST AND A PEDIATRIC ORTHOPAEDIST.THERE IS A CHILD SEARCH OR CHILD FIND PROGRAM THROUGH YOUR LOCAL SCHOOL BOARD THAT CAN HELP PROVIDE APPROPRIATE PT OR OT. EARLY INTERVENTION IS INCREDIBLY IMPORTANT AND UNFORTUNATLEY THE ONLY WHO WILL SEEK THAT OUT FOR YOUR CHILD IS YOU AND YOUR WIFE. IF IT HAD BEEN LEFT UP TO OUR FORMER PEDIATRICIAN WE WOULD STILL BE WAITING FOR OUR CHILD TO "SWING" HER ARM. BEST OF LUCK.