United Brachial Plexus Network, Inc.

I might suggest using our awareness information on the web site. You could print it off and make a packet and provide it to your area hospital ob departments. Maybe include your name and number as a possible contact if the parents or nurses have questions.

I did that at my local hospital, my sister is an OB nurse and they welcomed it. I have yet to have a call (thank god) but hopefully it's there if they need it. I also have my sister take a fresh issue of Outreach each time it is printed. Not only does that provide the most recent information but jogs their memory that the information is there if they need it.

This would also be good for local family doctors and pediatricians -- people have made good points that many times it is the pediatrician who is left responsible with the diagnosis and referrals.

Kim

I have had experience for 9 years with my daughter's brachial plexus injury. And I went through the same feelings of despair and abandonment after being handed a baby with an injury. Please do not, not for one minute, believe that the doctors and nurses are not trained to recognize this type of injury!!!They all tell you the same story...It'll all be better soon....Most babies recover....This is a bunch of BULLSHIT!
Let me tell you something. (from a medical malpractice journal) A Brachial Plexus injury is classified as an IATROGENIC injury...Look up this word. The definition of this word...CAUSED BY THE PHYSICIAN. Don't think for one minute that every hospital staff isn't trained to KEEP THEIR MOUTHS SHUT AND DON'T OFFER TOO MUCH INFORMATION. You know this is done for fear of someday sitting in the witness seat

I have had experience for 9 years with my daughter's brachial plexus injury. And I went through the same feelings of despair and abandonment after being handed a baby with an injury. Please do not, not for one minute, believe that the doctors and nurses are not trained to recognize this type of injury!!!They all tell you the same story...It'll all be better soon....Most babies recover....This is a bunch of BULLSHIT!
Let me tell you something. (from a medical malpractice journal) A Brachial Plexus injury is classified as an IATROGENIC injury...Look up this word. The definition of this word...CAUSED BY THE PHYSICIAN. Don't think for one minute that every hospital staff isn't trained to KEEP THEIR MOUTHS SHUT AND DON'T OFFER TOO MUCH INFORMATION. You know this is done for fear of someday sitting in the witness seat

My daughter is 9 now and I went through the same feelings of despair and abandonment when she was handed to me being given little or no information as to her injury. But please do not allow yourself to believe, not for one minute, that the doctors and nurses are not trained to recognize this type of injury. They know exactly when it happens. From a malpractice journal....A brachial plexus injury is classified as an IATROGENIC injury....Look this word up. Definition...CAUSED BY THE PHYSICIAN. Don't think for a minute that every staff of every hospital isn't instructed to keep mouths shut and not to offer too much information. Most parents of injured babies know nothing about this type of injury and don't have any idea what questions to ask and are satisfied with...."This should resolve itself shortly"
or "Most babies recover." Well, as we with injured babies know, this is BULLSHIT. It just gets them off the hook long enough to get you out of there. They know that if they even admitted to an error, they would be sitting in a witness chair some day!

Jazzie,

I completely agree - don't believe it for one SECOND that the OB/GYN, midwife, nurse, etc, doesn't recognize this injury IMMEDIATELY! I had a home birth with a midwife, same story as everyone else, shoulder didn't come immediately, midwife torqued on head to dislodge it. She said he might have a broken collarbone and suggested we see a pediatrician the very next day. 16 hours after the birth was when I first heard "Erb's Palsy".

Well... we got a copy of the birth records in preparation for a possible lawsuit and LO AND BEHOLD there on the infant exam were the words "possible erb's palsy".

Oh, and of course there's no mention of shoulder distocia or the turtle sign which is VERY OBVIOUS on the birth video. All these "looking at records" studies which conclude that BPI happens in the absence of shoulder distocia are such BS... doctors and midwives are very careful NOT to put shoulder distocia on the birth records for fear of liability. As if not diagnosing shoulder distocia somehow then makes it OK to tug and yank on babies' heads...

It may be true that most of these injuries recover within a couple of months. But enough of them don't and enough people stumble through those months with no help because they blindly believe the doctors when they say their babies will get better.

null for now,

I am guessing you may be posting anon for legal reasons like myself, or perhaps you just feel more comfortable. I am not sure if you would feel comfortable connecting but I would really like to talk to you about a few things and get your thoughts. If you are up to it please email me at my work email at tricia@rinconconsultants.com

Thanks

The hospital and staff were useless. They obviously wanted to get rid of us as fast as possible and give us as little information as possible.
The pediatrician on duty gave us a general description of what a BPI is and gave us a referral to a doctor who turned out to be a train wreck. No X-rays were done. I asked about it and was told they weren't necessary.
In the meantime, Dr. Excessive Lateral Traction disappeared after the delivery as fast as his little feet could carry him.

It's horrifying reading how little or no information was given to you all concerning your child's injury. When my daughter (Amber who is now 18 months old) was born, she had a shoulder dystocia that resulted in RBPI. It was apparent immediately, and my midwife and the 2 staff nurses pointed it out right away. I worked with these people, so they were completely honest with me (I'm an OB nurse myself).

I had a PT come in to see me, but since my daughter was sleeping when she came in, and since I am a nurse, she just generalized the ROM and said she'd stop back to show me when Amber was awake. That never happened! Surprise, surprise.

Our pediatrician was out of town when our daughter was born, so someone else came in and examined her. He said she'd be better within a few weeks. That didn't happen either. We did get an orthopedic referral for 1 week from discharge though. She wasn't of much assistance though. We asked for more referrals, different information, and insisted on Shriner's. We've since changed pediatricians and orthopedists and do go to Shriner's.

Here's the kicker! Many of you mention that the nurses weren't of any assistance to you as a BPI parent. I have to agree that that is what I experienced as well. But in defense of the nursing staff (since I'm an OB nurse), sometimes we don't know much. I worked for 3 years as an OB nurse and had only seen Erb's Palsy once before and believed the pediatrician when he said..."it'll get better by iteself". I'm sorry to say that I learned the hard way. I now work at a different hospital and have spoken with the nurses, pediatrician, and midwives there. Most of them know very little information or incorrect information! It's appalling.

Information on ROM, how to dress, bath, feed, etc. the baby, PT/OT referrals, Early Intervention information, explanations on what Erb's really is and many other items need to be provided in an easily understandable form to ALL parents of BPI children. Wouldn't that be nice!?!
So, in short, I've made it my mission to inform all of my co-workers. I'm in the process of putting together an inservice for the staff that I work with. And one of the pediatricians has agreed to help me write a protocol on what the nursing staff and peds dept. is supposed to do in cases of BPI, that way babies aren't overlooked.

I've also made it well aware, that if I'm off from work for a few days and a baby is born and discharged before I return to work (I only work 3 days/wk) with BPI, then my phone number should be given to that baby's parents and those parent's information should be provided to me if the parents are receptive to that. I wish I had met someone who was willing to do that when Amber was born.

It's so very frustrating! I feel like I've been teaching the medical staff about BPI instead of them teaching me as the parent! Ugh!

Tanya in NY

our doctor said "I'm so sorry. I should have done a c section." and then he left the room, never to be seen again!

Then the peds doctor said.." yeah, maybe we should check this out. lets get an x ray"

no broken clavical" they told me. but still no answers..

Then, another peds soctor came in and said (I was on many many drugs from being so sick.. anti siezure, something for toxemia, something well swelling) "blah blah, brachial plexus, blah blah blah, definately surgery, blah blah, Texas Children blah blah" (the blah blahs were what I couldnt understand be it the drugs or he was talking too fast) And of course i was in the room alone at that time.

never saw him again either!

then there was a post it on his crib. It read "do not put on right side"

upon release... i asked for med records, read erbs palsy and did the research on my own!

I am surprised and a little shocked to hear your experiences. In fact, I think I was very lucky.

My son was born in a private hospital in Lisbon, Portugal. My OB had been following my pregnancy from the beggining. The day he was born I noticed something strange with the pediatrician and of course a lot of nervousness with the doctor and nurses at delivery. The following day the pediatrician told me the baby had bpi and that she didn't tell me right away because sometimes it passed in 24 hours and there was no need to frighten the mother. I aggree it would have been too much of a shock at birth. Then she was not at all positive about it, she said she didn't know how long it would take to pass and that I should see a specialist right away and start PT. She directed me to a doctor I later found out to be the best bpi specialist in my country.

My OB came the same day to see me and told me he already knew what happened but thinked the pediatritian was exagerating a bit and that it might pass by itself in some months. He tried to inform himself and spoke to the pediatrician that followed my son after the hospital. They both tried to inform themselves on what was bpi and tried to calm me down about the consequences. My OB came everyday to the hospital and he also came during the night to visit my son. The baby was x-rayed and also had a broken clavicula.

I started to see a bpi specialist when my son was five days old and then understood that the pediatrician at the hospital was the one who was right. I always had that feeling. We did try and believe what other doctors and friends told us, but I had a feeling it wouldn't be that easy. The nurses were very careful as well. They always helped but directed us to the doctors and didn't give opinions. Sometimes opinions can be kind of silly and pointless and that didn't happen. Another thing I found was nice is that when the pediatrician told us, the day after the baby was born, my husband and sister and the nurse were at the room. I started to cry and the doctor said it was a good thing to cry. I also think it was a good thing she said that and I do think I was lucky in a strange way.