United Brachial Plexus Network

As many of you are aware, there is a very unique symposium being coordinated by John Hopkins University School of Medicine. The symposium is called "Exploring Shoulder Dystocia and Brachial Plexus Injury: Multidisciplinary Perspectives". This symposium is designed for Obstetricians, Family Practitioners, Pediatricians, Neonatologists, Neurosurgeons, Neurologists, Plastic Surgeons, Orthopaedists, Physical Therapists, Midwives, Nurse Practitioners, Nurses and Hospital Administrators.
The stated purpose of the interdisciplinary symposium it "to create an open environment for education, debate and improved communications among a diverse community of professionals impacted by the problem of shoulder dystocia and brachial plexus injury through didactic sessions and small group discussions..."

John Hopkins has extended a special invitation to UBPN. On behalf of UBPN and UBPN's new Brachial Plexus Injury Prevention Program (BPIPP), Rich Looby and myself have been asked to participate in a discussion called, "When Something Goes Wrong: How to Talk to Patients and Families after an Adverse Medical Outcome".

We feel that as representatives from UBPN that we will have a unique opportunity to help in representing the bpi community, therefore we would really like to hear from you. Your personal experiences, thoughts and opinions are VERY important and the medical community needs to hear them. Rich and I will compile the experiences, ideas and information, and be sure that it is heard by the medical professionals that are attending.

We would like to ask those that are willing to share to think about the following and post on this thread.

1) After a bpi occurs what should parents be told?
2) What information should be provided to the family?
3) How should things be handled?
4) Should the family be offered support, if so what and by whom?
5) What should their ob/gyn tell them about the injury?
6) What should their ob/gyn tell them about the causation of the injury?
7) What information were you personally provided with?
8) What information were you not provided with, that you feel you should have been or that would have assisted you?
9) Were you provided misinformation or lack of information altogether?

We are also interested to know if anyone in our bpi community received any written materials of information from their hospitals, ob/gyn doctor or other medical staff during their hospital stay.

You certainly do not need to specifically answer each question on the list, but feel free to share anything that you are willing to. Your experiences and opinions are very important and this unique symposium provides a first for medical professionals to hear our perspective and to hopefully learn from us.

Thanks so much for your valuable input!

Lisa Muscarella
UBPN
Board of Directors

This is great, Lisa. I'll try to answer as best I can.

1) After a bpi occurs what should parents be told? They should be told that the child sustained a brachial plexus injury, and the delivering physician or midwife should deliver the news and answer any and all questions about that particular child's injury without running out of the room in legal fear. They should also be made to explain HOW it happened. It should be thoroughly explained, and a referral to a BPI specialist and an appropriate therapist should be provided - not just the local yokel orthopedist or whoever they send you to. The parents also should NOT be told "it'll probably clear up on its own."

2) What information should be provided to the family? Thorough, ACOG-produced (wishful thinking) info with diagrams and full explanations of what a brachial plexus injury is and - like I said - a referral to a true BPI specialist and local therapist.

3) How should things be handled? With honesty, thoroughly accurate information and a full apology from the doctor and promise to remain helpful and available should the mother need anything.

4) Should the family be offered support, if so what and by whom? Aside from a pledge of help from the doctor, I think a referral to a local BPI support group could be helpful.

5) What should their ob/gyn tell them about the injury?
How it happened to my baby and why. The parents should also be told which obstetrical maneuvers WERE used in the delivery, while the parents' memories are still fresh and they can detect how the explanation squares with what they just went through.

6) What should their ob/gyn tell them about the causation of the injury? Full, honest disclosure (more wishful thinking).

7) What information were you personally provided with? that the nerves in my baby's arms were "stretched," it's called Erb's palsy, and here's the name someone you can take him to when you leave.

8) What information were you not provided with, that you feel you should have been or that would have assisted you? What I would have most wanted is accurate information on how often these injuries do NOT clear up on their own and how necessary it is to get the baby to a specialist as soon as possible. I'd also have liked written materials to take home on what a BPI is (to read when I was calmer and not in the throngs of postpartum shock), diagrams of the brachial plexus and how it affects arm function, materials from any reputable doctor, hospital or clinic that specializes in BPI and a full explanation of HOW my son was injured.

9) Were you provided misinformation or lack of information altogether? Lots of info was lacking; what I did have was heavily edited and carefully worded by the people who "broke the news" to me to make the doctor look innocent. Oh, and the doctor ran from the room right after the delivery and never talked to me at all. Grr.

And no, I received NO written materials on BPI at all.

1) After a bpi occurs what should parents be told? The family should be given a full explanation of what a bpi is, how it happens, and what needs to be done to treat it. (I got none of this, and had to research everything on my own). Most importantly the medical staff should not "minimize" the seriousness of the injury.

2) What information should be provided to the family?
The family should be provided with extensive factual information on bpi's in a written format along with recomendations to the various bpi specialists.

3) How should things be handled?
With a prompt, aggressive approach. Staff should work together to ensure the patient gets all of the proper treatments with all of the proper specialists. Most importantly - do not treat the parents as being "overbearing" for them wanting to get the best and most thorough care for their child.
4) Should the family be offered support, if so what and by whom?
The family should be directed to a psychiatrist or support group immediately.

5) What should their ob/gyn tell them about the injury?
Families should be told that it wasn't their fault, and be reassured that the ob/gyn will be at their full disposal to answer questions & provide help as necessary. (My O.B. ran for the hills, never to be heard of again).

6) What should their ob/gyn tell them about the causation of the injury?
They should be told exactly how it happened, no matter what legalities the ob is worried about.

7) What information were you personally provided with?
I was told that the baby had shoulder dystocia, which meant his shoulder got stuck on my pelvic bone. Then, that they thought his clavicle was broken. (No mention of BPI possibility). That was it.

8) What information were you not provided with, that you feel you should have been or that would have assisted you?
I should have been told explicit details about erb's palsy -not just given a diagnosis. It seemed like the medical staff didn't think that I could understand medical terminology which was is not the case, in fact I find it extremely helpful.

9) Were you provided misinformation or lack of information altogether
The medical staff really didn't give me enough information about the erb's palsy. They minimized the seriousness of the inury, like it was no big deal. (If I wasn't aggressively researching the injury, my son wouldn't have gotten therapy and the proper treatment.)

I remember being "relieved" when he told me that she would be 'just fine' in two weeks. I remember the nurses being angry at the doctor. I wanted hope that everything would be OK. They said to keep her arm pinned for two weeks and then take her to a neorologist and see what he had to say. I remember my parents - when they first saw their very first born granddaughter (who looked exactly just like me by the way) - they were so worried because her arm couldn't move. My Dad said, "It's just like a noodle Chris". At the same time I wanted HOPE! I wanted to believe that everything WOULD be OK - and when they told me - "we have to wait and see" it was almost a relief because I wanted so much for her to move that arm. Waiting and seeing gave me more time if that makes any sense - but looking back I think that I/we weren't told the truth at all. They all knew this was a permanent injury but I didn't know that at that time. Sometimes I feel that maybe that was better because the HOPE was still there???
At our two week check up I got one little pamphlet from our neurologist - finally some info which wasn't much by the way -I was still so confused at that time about what had happened - but I was so glad to get that pamphlet because I knew that my daughter and I both needed to know what the heck happened. I still have that pamphlet - it was the only info I had really.
The OBGYN - gave me nothing, said, "You made me work for that one!" Thanks Doc!..... The pediatrician came in andwas so concerned about her 'loose hip - left hip dysplacia' than he was about the arm that couldn't move at all. Yep - I'm frustrated!
We also did not know that surgeries were being done until during our lawsuit and we had to have her examined by many doctors - everbody seemed to be so clueless about this injury.... Whew - I'm going to go eat some chocolate or something!
Christy

My BPI occured when I was only 12-13 years old. That was back in 1966-67. The positioning on the operating table for surgery. I could not hold a pen, fork or anything else in my right hand. I had to learn to do everything with my left hand. My parents were told that it was underlying neurological problems and no treatment and no other explaination was offered. I did not find out that it was a BPI until I was 21 years old. I am now 50 and can't believe that my parents were lied to about what had happened to my arm and hand during surgery. Could the doctors have done anything at that time to have restored the use of my arm? Why wasn't my parent's told the truth. This was in a childrens hospital in Texas. Thanks, Debra

1) After a bpi occurs what should parents be told? I agree with what's been written above - full, honest explanations of BPIs, and the extent and/or severity of BPIs. I clearly remember hearing "she will recover in a few months" and thinking that was the end of it! Little did I know that spontaneous recovery is not always the case...

2) What information should be provided to the family? Clear, concise diagrams, pamphlets, something, anything! Not just the word of the doctor.

3) How should things be handled? I think the day of birth, we should be given a thorough explanation of BPIs (as well as some tangible informational documents), but I think the doctor needs to return willing to answer questions at some point within the days following the delivery. I couldn't have handled any more in-depth information the day Sarah was born, but I sure wanted to ask a lot of questions the next day.

4) Should the family be offered support, if so what and by whom? I think a referral to a local support group or therapist would be ideal. I had so many questions and was lucky enough to find UBPN. From here, I've made some great friends that have been wonderful in helping me deal with Sarah's injury. I know I couldn't have done it by myself, and feel for the people who don't have that kind of support network.

5) What should their ob/gyn tell them about the injury?EVERYTHING! How it happened, why it happened, what was done to prevent it, etc. And tell us in terms that we can understand. After 2 years of living with this injury, I know what a "waiter's tip" is and the differences between avulsed, ruptured, torn, stretched, etc. However, if someone had come to me with that information while still in the hospital, I wouldn't have had a clue!

6) What should their ob/gyn tell them about the causation of the injury?The truth! Take some responsibility if necessary! While I don't think that will ever happen, I do think that telling new parents that it was a traumatic birth or that the baby got stuck or something to reassure us. It's such a frightening time for new parents.

7) What information were you personally provided with? We were lucky that an OT from the hospital came over the day after Sarah was born with lots of information. She wasn't scared to tell us the statistics on spontaneous recovery. She gave us diagrams to do ROM, exercises to do to help stimulate her nerves, she even gave us a printed copy of the Texas Children's BPI clinic website. It was so overwhelming and scary, but she didn't sugar coat things for us, and we are so grateful to her for that now. We had a realistic picture of what could happen.

8) What information were you not provided with, that you feel you should have been or that would have assisted you? I don't know that we could have gotten more information... Like I said, our OT did give us lots of information. However, getting that information from the doctor and getting straight answers from him would have been so much nicer.

9) Were you provided misinformation or lack of information altogether? We were told the same thing I bet most people are told - "Her arm will recover in 2-3 months". Right after delivery, I knew immediately there was something wrong and the OB told me "She's having a little problem with her arm". It's sickening to me now that mother's are told these things when there is no guarantee that things will get better or their child will spontaneously recover. It's like telling a brain tumor patient that it's benign without having any test results.. They cannot know that for sure and I don't think they need to say those things and create false hope for parents when their child may not recover and may have to live with this injury the rest of their lives.


Cherie

1) After a bpi occurs what should parents be told? Of course, anything they're told should be the truth firstly. They should be told that it was a difficult delivery, that the shoulders were stuck, and that they did various maneuvers to deliver the baby, but that the baby suffered an injury called a Brachial Plexus Injury.

2) What information should be provided to the family? They should arrange for a PT or OT to visit the family at least once daily during the hospital stay. The therapist should demonstrate ROM exercises and give a handout with illustrations to the parents. On the day following the delivery, the parents should be told that while it is believed that most BPIs resolve spontaneously within a couple of months, at least 10% will not resolve w/o continued therapy and / or surgery. The parents s/b told that they should see a Pediatric Neurologist within 2 weeks and also a referral s/b made so that the visit can happen that quickly. I don't think that the family s/b told to pin the baby's arm to their shirt, as we were told, except perhaps for brief periods in situations where the baby will be passed around / others holding the baby or maybe if the person holding the baby is walking around and doing other things, etc. The OB and Pediatrician should communicate w/each other to make sure that the family gets referrals to a local Ped. Neuro., a PT / OT, and the state's early intervention program.

3) How should things be handled? I'm not sure what you're asking, but I think that the dr. should give a brief explanation about the delivery / diagnosis on the day of delivery. Then, I think the dr. should return the following day to check on the mom and inquire about the baby. During that visit, I think the dr. should explain in a little more detail about what went on during the delivery, including maneuvers peformed and also give the mom info. about recovery rates, seeing a Ped. Neuro. w/in 2 weeks, etc. (as stated in question #2). I think that giving all this info. on the day of delivery is TMI, but the following day w/b good (at least in my case, that's how I felt). I don't think the dr should just brush this off, giving the parents false hope in that most BPIs recover and not to worry, etc. Another thing is that I think the OB should apologize. I think that there's a way to do that w/o admitting negligence if he/she doesn't believe that they are negligent at all. Certainly the must be sorry that the baby got injured though, right, so why don't they just say it??!!

4) Should the family be offered support, if so what and by whom? I think that at a minimum they s/b offered support by a Ped. Neuro., a private PT/OT, and the state early intervention program. I think that the OB and/or Ped. should ensure that referrals are made in order to expediate the visits and avoid unnecessary delays. I think it would also be nice if they were offered info. on family counseling svcs. if needed. It'd also be ideal if they were given a referral to a BPI Specialist -- now that is something you would expect to come from a Ped. Neuro., but I guess the problem is that many neurologists don't know of or don't believe in the latest surgical sucesses it seems. At least in our case the neuro. was overly optimistic. Someone should give the family info. to a BP support group (either locally or UBPN would be nice) -- not sure who would be responsible for passing on that info. (perhaps the pediatrician??). Since I'm already reaching for the stars, how about a referral to a good med. malpractice attny - okay just kidding!!

5) What should their ob/gyn tell them about the injury? On the day of delivery, I think he should be very general -- see response to question #1. Then, on the day following delivery, as brought out in my response to question #3, I think the OB should explain about the delivery in more detail, including maneuvers performed and the diagnosis of the injury. My OB used the term shoulder dystocia when he came to see me the day after delivery, but it was only the Ped. who used the term Erb's Palsy (which I later foundout not to be completely accurate b/c my baby also had/has Klumpke's Palsy). I think that the OB s/b able to explain what happened w/o actually admitting or denying fault.


6) What should their ob/gyn tell them about the causation of the injury? I don't know how to answer this one. Of course, honesty is always best. I don't even know what some of these OBs believe in their heart is the cause. I think some of them know they caused it and don't have a good excuse as to why, some of them don't think they did cause it, and some might believe they caused it but that it was unavoidable and that it was the only way to save the baby's life (not saying I agree, just saying what some believe). From discussions with my OB, it seemed like he wouldn't have denied that he caused it, but that he did what was necessary to save her life and that the BPI was unavoidable w/o a C-Section. It wasn't until we listened to the defense's expert witness that we heard the in-utero / natural propulisive forces of labor garbage. I don't think he personally even agreed with his expert witnesses. Okay, getting upset now & clicking hard on keyboard, time to breath deeply and relax.


7) What information were you personally provided with? I don't even remember exactly what we were told on the day of delivery, but it wasn't much. On the day after delivery, the OB came to see me & inquire about the baby (which I appreciated) generally discussed what happened (when I asked him) and used the term shoulder dystocia. He didn't use any of the terms EP/KP/BPI though -- the Ped. did use the term Erb's Palsy on the day following delivery. Someone in the hospital, not sure if it was the OB, arranged for an OT to see us the 2 days following delivery that we were in the hospital. The OT demonstrated ROM and observed us trying it and gave us a handout with pictures of the exercises. I really appreciate that, esp. after hearing about so many people not even getting a diagnosis. Also, when we went to see the Ped. for the 2-wk follow up, he referred us to a local Ped. Neuro. I think at that visit, he should've also referred us to a true BP specialist. The Ped. happened to be in the same bldg as my OB, so we went to say hello to my OB/nurses, etc. and show them the baby while we were there and I told the OB about the Ped. Neuro. referral. He later followed up w/me and when he foundout that our appt. wasn't as soon as we would've liked, he called the Ped. Neuro.'s office and got our appt. moved up closer. I did appreciate that. Another thing I remember is that the OB happened to call me on the day I was going to our health insurance co. for a hearing to appeal them denying us seeing out of network bp specialists and denying us to go to TCH for surgery, anyway when I told him where I was on my way, he told me to call him back if he could help with our appeal. I'm not sure of his motives, but either way, I did appreciate the offer though I chose to decline his assistance at that point.

8) What information were you not provided with, that you feel you should have been or that would have assisted you? It would've been helpful to get a more accurate diagnosis (BPI or EP & KP, not just EP), but I'm thankful to have gotten as much as I did since I know many don't even get that info. We were not provided with a referral to see a PT/OT. We were not given info. about our state Birth to Three info. In fact, when I foundout from a friend and questioned the Ped. Neuro. about it, she said, I guess you could call them (kinda like it wouldn't hurt, but it didn't matter too much). As far as BP specialists & support groups, since so many people have the internet readily available, I think most can find the info. they need pretty quickly (as evidenced by seeing some parents on here when their baby isn't even a week old). Since were weren't really online at that point, for us it would've been helpful to get specialists' names earlier than we did (at about 6-7 months). I was able to get a copy of Outreach early on which helped, but that was from a friend who coincdientally has a daughter with a BPI too. I think she got Outreach from her Birth to Three OT.


9) Were you provided misinformation or lack of information altogether? The biggest piece of misinformation was the false hope of recovery we were given. The biggest piece of info. we were lacking is a referral to a BP Specialist. We also didn't get any info. on Birth to Three -- I foundout from a friend. When the ped. neuro. had us get an mri, she didn't discuss the unreliability of the films partly due to our baby being so young at the time and partly b/c she moved during the scan. We weren't given the surgical criteria until we eventually read info. in Outreach and from the TCH website.

The only written info. we got during the hospital stay was a printout of the ROM exercises to do. What I would've appreciated would've been written info. regarding: general BPI info., Birth to Three, BPI specialists and support groups.

I really wish I could attend the symposium. I hope everything goes really well for you and Rich. I'm sure you'll do a great job as UBPN representatives and am anxious to hear about your experience. Was my reply too long?? Sorry! :O)

~Tina, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. -- C/S)

You guys are all so awesome!!! Thanks so much for helping to represent our bpi community and for caring enough to take the time to share with us, so that we may share with doctors at this symposium. You guys have all shared WONDERFUL thoughts, ideas and information!

Tina....LOL! I am with you on the med mal attorney recommendation. Too funny! Hey, why not reach for the stars. Nothing wrong with dreaming, right?

Christy & Tina...you both received something in writing at the hospital about the injury or about ROM. Tina, I don't know if you still have the form, but Christy you mentioned you do. If you guys would be willing.....could you possibly mail or fax me a copy? If so, please drop me an email at Lisa@ubpn.org

Thanks sooooo much to each of you that replied to this thread! This information is so very important and the medical professionals need our feedback.

Anyone else want to add their thoughts, opinions and experience....please do.

Thanks again,
Lisa

Lisa
This conference is about pediatric care and prevention so there is not much I can add.

I feel doctors need to examine the babies as whole persons and not just focus on the arm.

I think they need to address some of the pain issues in the newborn.

I feel they often neglect to tell the parents that resolved Horner's is not cured -- The eye is still affected as is the face. Sometimes they act as if it is no big deal but it can be!

I think they should be aware that adult/obpi suffer from medical neglect. We are often dismissed and our arms are never addressed during normal physicial. We are not use to it we are use to being ignored due to a lack of information. We just stop asking questions!

I think doctors should look into the problems caused by compensation. The secondary injuries caused by this injury might be preventable to a certain extent.

This part will be a bit longer but I would love to see this taken care of as soon as the baby is born.

1. A social worker come to the family to give support.
2. The babies pain addressed and not ignored
3. Call and expert immediately and expalin ROM to parents.
4. A pamphlet with information on support networks and ROM. Some of the information that is on our website for new parents. To help the families begin to wade through the great mystery of OBPI and what to do next.

As many know I had two very premature grandchilren and I was amazed at the wonderful support and information we were given as the baby left for NICU.
Both my grandchildren were in Intensive care for months and I was, as the granparent, give all the information as to what to expect. Steps forward and step backwards ... this was a great help to us as a family trying to cope with these two tiny sick little ones. I remember thinking when the first one was born.. " Why can't they do this for OBPI babies?" I feel at least give support to the parents and address the physicial needs of this tiny little ones.

As I read the parents answers I could answer the questions for my own mother who was sent home 2 weeks after I was born (65 years ago). They were told my arm was pinned to my shirt to keep me from scratching my face... why still do this when better medical care is there? All the parents need is honesty and direction.

Jumping down off the soap box.
Kath

I think that the UBPN is completely and utterly unqualified to speak on this topic "When Something Goes Wrong: How to Talk to Patients and Families after an Adverse Medical Outcome" because this message network is so highly characterized by such sugar-coating, an enormous basis for surgery and their surgical gods, withholding counter balance in discussions, preferential display of messages, and completely judgmental termination of threads.

For legal reasons I am a phantom here, but my kid's arm is testimony to my conscious in this writing.