United Brachial Plexus Network, Inc.

I still remember to this day my doctor saying "She has a little problem with her arm". Gosh, I never thought those words would change my life.

They of course did the standard x-ray to check for a broken clavicle.

The occupational therapist came to our room 2 days later and told us about BPI. She gave us the standard "It'll get better in a few months", showed us how to do ROMs, made us an appointment for 2 weeks later, and sent us on our way. I do have to say though, that she did tell us that some of these injuries are severe and pointed us to the TCH website.

Cherie

My OB did not even come back to see me after Kyle was born. He sent his associate to see me the whole time I was in the hospital. We were told right away that it was erb's palsy by the hosp. doctors and on-call pediatrician. I ask about an x-ray and they told me it wasn't necessary because he would be fine in a few days after the swelling went down. Was told it was due to him being a large baby and coming fast. Kyle was black and blue on his whole left side and all the blood vessels in his eyes had ruptured and his eyes were bloody. They did however send a PT to come up an explain how to dress him and care for his arm so as to not let it hang limp. She was very helpful and we actually started to see her on a regular basis when Kyle was 2 weeks. It was at this time that she kept feeling a popping during rom and she sent us for x-rays. Guess what???? broken clavicle at birth....boy was I hot at the hospital staff for telling me it was not necessary to do an x-ray right after birth. This PT turned out to be a godsend. She filled us in on the possiblity of the severity of this injury and sent us to a BPI specialist and worked wonders with Kyle for three years. Then she moved. I confronted my OB at his office weeks after the birth to question him about what happened. He told me it was just an unfortunate medical emergency that could not be helped and told me Kyle would be fine, that 95% of these babies recover. How wrong was he. We are now facing our second surgery next month.
Karrie

My granddaughter's left arm was flail after birth, and she had some breathing difficulties. Her first agpar was 2 before going up to 7 on the 2nd try. She was put into an oxygen tent and monitored by a nurse for an hour. She was x-rayed to check for a broken clavicle. Her arm was put into a sling. The next day the pediatrician came to the room and talked to us (the parents and all 4 grandparents) telling us that Grace had Erb's palsy, it would probably clear up in a couple weeks, and that no surgery was available for this condition. We didn't know what to think, just hoped the condition would clear up quickly as the doctor predicted. When it became clear that this wasn't going to happen, I got on the computer and went on a Google search which eventually got me to UBPN. After realizing that Grace had a brachial plexus injury, my daughter and her husband had to insist for a referral to a pediatric neurologist and then ask for therapy which started when Grace was almost 2 months old. It's a real shame that so few doctors seem to have any knowledge about bp injuries and don't even seem very interested.

I guess I was a little luckier than most. My OB told us as soon as Andrew was born that he had something wrong with his arm. He made sure that the OT at the hospital was contacted and she was there giving us instructions the day after he was born. (He was born in the evening, so she didn't come to see us until the next day). The OB came in and talked to us the evening he was born about the injury and what we needed to do. Of course, he told us that it would be better in about 6 months and we wouldn't even know there was anything wrong. This wasn't the case and I wish they would have told us that there is the possibiltiy that it would be a lifetime injury. The OB that delivered him wasn't the one on duty at the hospital when we were discharged, but he came by to see how we were doing. He was very supportive and informative. I'm grateful for the information that we did get, though I wish they were a little bit more honest about the possibilities.

Good luck with your study.

Connie

My daughter was born with a broken clavicle, but in my case, the Erb's Palsy was not diagnosed or noticed until we saw a new pediatrician when Taylor was 4 months old!!!!!!! She has a mild left Erb's Palsy, but I guess it went unnoticed by hospital staff.

When my daughter was given to me they said she had a limp arm because she got caught on my pubic bone and it would get better in a few days. When the pediatrician checked her he said the same but if it didnt get better in a week call him. I called him in a week,he referred me to an orthopedic who told me to move her arm around and wait for a month. I went back a month later and the orthopedic told me to wait a bit longer if she didnt gain any movement by 6 months she would do surgery. I then called an attorney who diagnosed my daughter with BPI and gaveme a list of usefull contacts and i finally hooked up with EIP. At four months my daughters OT recommended a neuro surgeon to me. I had to get a referral from my pediatrician who said to me, What BPI? And then said that i wouldnt want to take my baby to the neurosurgeon because he would cut her up!!!

After my daughter was born she was handed to me as if nothing hsppened. I asked what was wrong with her arm b/c I saw them looking at it funny and I saw that it wasn't moving at all. They said she was fine. She would be back to normal very soon.
The day we were leaving the hospital they told me to pin the arm to her chest and do exercises. They gave me a name, "Erb's Palsy"
They said that she would be fine in 3-6 weeks. Never said anything about therapy, BPI specialist or neurologist. Never even said that some children do not heal. It was all misleading. I was lucky to have the Internet to learn it all on my own. If I didn't have access to the Internet I have no idea where she would be today. We need to teach hospitals and doctors...it's pretty darn sad, isn't it!?
Guest for personal reasons

My story will sound a lot like the others. My pediatrician said "Check his right arm" to the nurses as she handed him to them. The special care doctor looked him over as I was being given additional drugs after delivery to stop me from trembling and screaming and clenching from the pain of pushing for 3 and 1/2 hours. (The additional drugs were so I could get through the hour of stitching up). As I was completely out of my mind and getting stitched up, the special care doctor said our son MIGHT have Erb's Palsy, that they wouldn't know for a while and that 90% of them heal quickly (within a few months). She also said he would be checked for a broken clavicle. She focused on the positive and that was the last I heard of it. I didn't give it another thought because it went in one ear and out the other since I couldn't even think clearly after the delivery and all the pain.

The next day, my son was sent to x-ray and they said his clavicle was broken. They said that we needed to pin his sleeve so that the bone would heal. Because we pinned the arm, I wasn't looking at how limp it was and no one ever mentioned the injury again. They just said to follow-up with an orthopaedic doctor for the broken bone. The pediatricians in the hospital (in-house drs who share an affiliation with my OB) didn't say a word about Erb's Palsy. Our pediatricians don't go to that hospital, so we had to have the in-house ones.

When we got home from the hospital, my husband found the UBPN and Francine's site on the web and diagnosed the injury. I didn't believe my husband and was so angry at him for suggesting it. I thought that wasn't possible because the doctors would have said something in the few days we were in the hospital.

At my son's one -week check up with our pediatrician, she confirmed the diagnosis. We were referred to a local orthopaedic doctor, who then referred us to our BPI specialist after a few weeks. Oh, and it wasn't until our son was one month old that our pediatrician told us we could start him on OT/PT if we wanted!

Again, thank Goodness for these boards and Francine's site. Thank you Francine! I wish I had read your web site prior to chosing a VBAC (since I unkowingly had many shoulder dystocia risk factors)!

I guess that I am in the "lucky" group (if there is one on this board!)

After my son was born, he was very swollen and purple and began to have breathing difficulties. His limp right arm was noticed right away (BTW, my OB was down the hall delivering another baby. He had felt that that I still had a long time to go until pushing and it turned out that that wasn't the case. They tried to hold me off but I couldn't last very long. It hurt a lot even through the epidural) They actually grabbed an OB walking by and told him to get dressed to deliver my baby since there wasn't anyone there to do it and I couldn't wait anymore. My OB came back just in time, though.

Michael was taken to the NICU right away (an aside - of 3 babies for me - all 3 went to the NICU for different reasons. That alone is one of the reasons that my hubby doesn't want any more kids!). He stayed there for 8 days - for O2 help, severe jaundice and a calcium deficiency (he now has a scar on the top of his right foot/ankle where he ended up with an IV infitrate)

The morning after I had him, a physiatrist came by and explained that Michael had a BPI (the OB also stopped by and told me the same thing). I was told that his injury would most likely heal by itself - certainly within the first 3 months or so. If not, well....there was this place in TX that did surgeries for it as well as a place in Philly, but that was for "extreme" cases and he felt sure that Michael wouldn't be one of them (Michael is having his second surgery next month). I, by nature, am an information person and after my discharge came right home and started looking for info on the web. I found the message board at PP and from there, Francine's site and from there, UBPN.

While in the NICU, we saw a PT and an OT (my insurance doesn't cover OT, so we stayed with the PT). They showed me how to do ROMs (even gave me a print out from UBPN!! So there is definately some hope!!) and told me how to handle his arm. I was told *not* to pin his arm to his shirt (I forget the logic now, but there was some....) I think that I remember them saying that they xrayed him for a broken clavicle and that he didn't have one (I was thrilled - before I understood what a BPI was...)

MY OB called me at home a couple of times after I was released to check on me and Michael.

We continued to see the hospital PT after discharge on a weekly basis until he was about 19 months old (he was doing well except that he wasn't walking at all until 19 months - no steps, cruising, etc) Once he began to weight bear on his legs, she discharged him (we were also seeing an EI OT at that time and the PT felt comfortable with that) We will be going back to see her after Michaels caps/acromio surgery since he will age out a week after surgery.

So, all in all, one of the "lucky" ones, I guess....

Hello! I was basically told the same thing, that my son would recover in a few weeks and to take him to therapy at a Children's Hospital in a few weeks. But the pediatrician, (not mine), at the birth didn't know much about it, a little, and told us things to do with his arm, which when we finally got to therapy, found out it was all wrong. We found out it was Erb's Palsy only once we took him to therapy & they still told us he would recover so we figured he would improve. It wasn't until we started researching our options that some of the picture came into focus and believe me, the picture still is not in focus for me. This all happened in Panama where no one gets operations for this, there just isn't any. If we had known what was wrong and exactly what we were dealing with right from the beginning, I believe I would have made different decisions as I still feel so out on left field with all this. I don't even understand most of the terminology associated with brachial plexsy. Good information would have really helped me. Sincerely, Renee