United Brachial Plexus Network, Inc.

Lisa, I have prob. saved pretty much every BP-related paper I've received (I have a big filing cabinet and "piles" of papers elsewhere too), but I don't know if I can locate it. I'll certainly try. I'll e-mail you if/when I find it. BTW, I know I wrote a novel -- see what happens now that our case is over. I guess that's the good thing about it being all done -- even though we lost our trial, I feel like I can once again speak freely. For a long time, it was very difficult for me emotionally b/c I was afraid to say too much for fear that it might possibly be twisted or be used against me somehow. I didn't want to do anything to jeopardize the case, so instead I would keep quiet. Well, I'm not quiet anymore. O:)

~Tina

Here's my take:

1) After a bpi occurs what should parents be told?

They should be told exactly what happened, how it happened, what to expect and what to do over the next several weeks & months. This information needs to be discussed immediately, calmly and reassuringly. In my case, this would have sounded something like this:

“Mr. & Mrs. Ferrado – I’m afraid I have some bad news. During the birth of your son Matthew, his shoulder became lodged against the pelvic bone. While attempting to remove him in an expedient fashion, it appears that some of the nerves in his arm – specifically what we call the Brachial Plexus nerves – were either stretched or torn. Now, we have no way of knowing just how serious his injury is at this point. However I’d like you to consult a neurologist, preferably one who specializes in birth injuries. Hopefully, we will begin to see movement in the arm very soon. However these injuries can range from nominal to extremely serious. We just won’t know for a couple of months. See the neurologist, and ask him what type of therapy he thinks would be appropriate, and what your next steps and plan of action should be.”

Instead, what we got was “He’ll be fine. These things work themselves out”. Total garbage.

2) What information should be provided to the family?

This question needs to be addressed PRE-DELIVERY, as well as after the fact.

First of all, all expectant parents need to be aware of BPI, and the apparent causes. It is obvious to me that there are many circumstances involved, including but not limited to:

Macrosomia, excessive maternal weight gain, high-blood pressure, diabetes, advanced pregnancy age, the use of pitocin, birthing position and prior history of shoulder dystocia.

Expectant parents need to know about the existence of this injury so that THEY, along with their physician, can make the appropriate choice.

Now, after the fact, nothing short of literature & discussion describing the injury, the treatments, listings of hospitals, doctors, surgeons, therapists and specialists should be provided by the medical community. Full disclosure should start with the OB-GYN upon his/her decision to take on a patient.

3) How should things be handled?

Discussion of the injury should be very professional. Obviously, we cannot expect the medical community to simply accept blame immediately and ask for mercy. However frank, simple discussion devoid of intention to defer blame or mislead patients is sorely needed. Discussion should center around treatment, education, expectations and helping the baby to heal. Believe me, I am trying to put myself in the physician’s shoes, which as you might imagine, is not a very easy thing to do.

4) Should the family be offered support, if so what and by whom?

Yes, the family should be offered support. Physicians need to embrace organizations such as ours, and they also need to educate themselves on this injury so they can begin to network with therapists, surgeons, hospitals and physicians who are experts in this area. Doctors in the birthing community should have plans to provide support by all those listed above in the event of this injury occurring. Only by being proactive, attentive, honest and supporting can the medical community begin to slow the occurrence of this injury, and the resulting tidal wave of litigation attached to the injury.

5) What should their ob/gyn tell them about the injury?

The OB-GYN should tell them what this injury is, why it happens and how it happens. I’m an investment manager. Sometimes, I make mistakes, pick the wrong stocks at the wrong time, and money is lost.
I don’t attempt to hide from my clients by misleading them, making excuses or attempt to transfer blame. It is my practice to contact the client, explain to them why I thought the stock was right for them, why we bought it, what’s happened since then, and why we must sell it at a loss. Doctors should try that angle. They could begin by explaining how the baby got stuck. What he/she did to maneuver the baby in order to prevent further damage. Then, how in the process, nerves got torn or pulled. They must also become willing to discuss what could have been done to avoid the injury in the first place, and ultimately, take responsibility. Honesty & professionalism need to be the order of the day.

6) What should their ob/gyn tell them about the causation of the injury?

This is going to be a point of contention. I think it’s fair to say that at large, the legal community and those of us who are victimized by this injury have determined that the cause IS excessive traction by the delivering physician. However, the medical community to date, have not put forth a reasonable excuse or reason for the incidence of this injury. Their modus operandi has been to ignore, mislead, defer blame and hide behind their lawyers while shielding their assets. Doctors need to accept blame when it is appropriate, and stop the games.

7) What information were you personally provided with?

I was provided with no information, absolutely none at all. The doctor was useless.

8) What information were you not provided with, that you feel you should have been or that would have assisted you?

Everything that I’ve already mentioned above, could have been useful. Simply ignoring it and pretending it didn’t happen provided nothing to us.

9) Were you provided misinformation or lack of information altogether?

Total lack of information and misinformation by the doctor saying “most of these things work themselves out”. Total BS.
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.

We got absolutely no information, and had to search it out on our own.

Let’s make one thing perfectly clear – the OB-GYN community is totally useless on this issue, and the time is now to get them to accept responsibility, either by litigation or proactive education. It is their choice. But it is our obligation to force them to resolve this issue proactively and responsibly, by illustrating to them that it is in THEIR best interest as well as the only real interest, which is that of our children’s health and welfare.

Sincerely,

John Anthony Ferrado

I am at school and forgot my PW, SO anyways, I've been debating on whether or not to reply to this, since my experience was different than most here.
I decided what the hell, someone might wanna hear my opinions. (my husband says i express them too much HAHA, but what do men know!)I hope this helps, I didn't want to just ignore the whole topic. Someone might learn something from what i have to say...


1) After a bpi occurs what should parents be told?
After the birth, the parents should be told as soon as possible what went on. They should in no way find this out on their own, once the baby is brought to them.

2) What information should be provided to the family?
Information on how to care for your new baby's injury and a list of Therapist and Doctors familiar with this injury. We were given step by step instructions from how to swaddle to things not to do. A therapist was also called and came to the hospital to meet with us and show us how to do these things.

3) How should things be handled?
Things should be handled with sympithy and compassion. My ob/gyn was very open and honest with us and told us exactly what went on and what we can expect.

4) Should the family be offered support, if so what and by whom?
Yes, I know that most places are so rushed, etc, unlike my small town. But the ob/gyn and the ped. should offer support whenever needed. My ob/gyn gave me his home telephone number for if we needed ANYTHING. He called atleast once a week to check on things and even came by a few times. Yes some might say he was scared of a lawsuit, but this was his first injury and has had no more since then. He is a very caring person with 5 babies of his own.

5) What should their ob/gyn tell them about the injury?
We were told that Sarahs shoulders were stuck on my pubic bones and it pinched some nerves in her shoulder. They did an x-ray and nothing was broken. She was just too big. (of course I replied with, "I told you i was ready long ago" and he said, "you were "ready" mentally at 6 mths LOL" Which is true :/)

7) What information were you personally provided with?
I was provided with a list of "how to's", a therapist, and the name of a neurologist to go and see

8) What information were you not provided with, that you feel you should have been or that would have assisted you?
I would have liked to have names of other familes in my area with this problem. We live in a small town though, so that is very hard. Like I mentioned above, Sarah was his first.

9) Were you provided misinformation or lack of information altogether?
Nope


any questions, feel free to email me msoileau@charter.net


Mandie

Wow. I am so shocked, angered and a little relieved to find out that when my son was injured during birth last year that my husband and I weren't the only ones to be left in the dark. We were told in the hospital that "this happens all the time and will be fine in 2 weeks". Luckily, we were sent to an excellent Neurologist, therapists, and Neuro-surgeon.

P.S This web site is excellent and I can't believe I never visited before. I will definately return often.

Lisa, I was looking for the ROM paper today (no luck yet) and found something interesting. On Nicole's "Patient Discharge Plan" thre is a section on the front that says "Instructions" and there is no mention of her BPI. On the back, there is a log "Status of Problems at Time of Discharge" and there are columns for date/time, problem, and status. Again, there's no mention of the BPI on there. There is one notation just written sort of randomly in the medications section that just says "L Erb's Palsy." I guess it wasn't a big deal since it would likely resolve w/in a couple weeks - NOT! Anyway, still looking. ~Tina

Just reminds me how glad I am to have gotten rid of that Pediatrician. Also, he worked for the same medical group as the OB, so I think it was a really good thing that it didn't workout with him. Well, that's all for now. Getting upset again. ~Tina

Mandie
Thanks for your post I am glad you did... now pass me the tissues. You post brought me to tears... just to think your OB cared so much about your family and baby. I wish my mother had that experience. I feel so bad for all the guilt that parents carry and to hear that a doctor was so caring renewed my feelings that some day many more will do the same thing and show they care about what happens to US after we are delivered.
Kath

Hi Guys,

Just bumping this up with the symposium right around the corner, in case anyone else would like to add anything.

Thanks again to those who took the time to share and provide feedback. Your words are important and we will do our best to share all of them. Thanks for helping to create a voice for our bpi community.

Lisa
UBPN

Let me add my two cents here, if I may:

1. I agree that a full and honest explanation should be given about BPI, including that it is a "neurological injury" and not just gloss over the explanation, but be sure that parents actually understand what a BPI is.

2. A protocol of what to (including diagrams of ROM), a list of pediatric specialists to follow the child and a timeline for seeking measures (including alternative measures). Also included should be support group listings/UBPN website.

3. Things should be handled tactfully, thoughtfully, and with follow-up support.

4. already answered that above

5. OB/GYN ~ or delivering professional ~ should tell parents exactly how the delivery went and explain that Shoulder Dystocia is leading cause of OBPI.

6. again, above.

7. the term "Shoulder Dystocia" and to pin my child's arm down --sleeve to chest--and it would resolve itself in time (and no timeline).

8. The anatomy of the brachial plexus; the fact that it was a nerve injury and not just "temporary bruising/whatever" from a rough delivery. A list of experts that deal with neurological injuries, especially brachial plexus injury.

9. YES! I was told it was not permenant; I was not told it was a neurological injury. I was told to pin the arm instead of doing ROM; I was told to "wait and see" instead of getting crucial care within a reasonable time. By the time I fully understood exactly what BPI was, the window of opportunity for correcting innervation to the lower arm was lost and muscle had died. I found information on my own via the Internet, not via the doctors that were suppose to be taking care of my child.

I had posted the other day about this meeting having just heard about it.

This is truly a special moment for the patient/family community. There are so many excellent replies to your posting about what should be said to the health care people. You will certainly have trouble including it all.

Please include that we are so pleased to be included in the debate. Doctors cannot fully treat injuries like this without understanding how it affects the patient and family.
I assume that the person who is behind the meeting is Dr. Belzberg and if I had the money I would fly out there myself to congratulate him for including the patients perspective.

Good luck and please provide us with a summary