United Brachial Plexus Network, Inc.

Kate,

Wow. You've posted insightful words. I appreciate them, and thank you for sharing.

Kate said: "Later on, maybe a year, I attended an OB/GYN conference on BPI. I talked (without saying I was a parent) to many OBs about BPI. I was able to see how honestly terrifying they find shoulder dystocia, how it is the spectre that lurks in the background of every delivery. How things can go horribly, horribly wrong with stuck babies. And I could sense how so many of them felt helpless in the face of it. I gained an appreciation for the tragedy that can occur. To these doctors, BPI was - yes- a minor inconvenience compared to what they were truly afraid of. Brain injury, asphyxiation, death."

I think you hit the nail on the head with this! With me being a L&D nurse, I know that SD is my worst fear! I cannot stress that enough. I can deal with a baby that is born and not breathing, with meconium, with seizures in the newborn and/or the mother, with having to do chest compressions on a baby after delivery, with a prolapsed umbilical cord, and so many other emergencies. I feel very confident in my skills. I know what the outcome will be for all of those scenarios. If I do "X", then "Y" will occur. But, with SD, "X" does not necessarily ellicit "Y" by any means. I have witnessed a baby's face turn from gray, to blue, to purple, to black while on the perineum, all the while helping the mother and OB/CNM do various maneuvers. It is the scariest situation that I have to say I have ever been in! I cannot stress that statement enough. I know that minute by minute, I am watching a baby die before my very eyes, all the while knowing that he/she is still stuck inside this mother. Take a moment to digest that information from my perspective as the nurse. Just for a moment. I thank God everyday that I have never had a baby die during a delivery or be permanently brain damaged, but I have been in deliveries where there were permanent brachial plexus injures, one being my own daughter's.

During the first few years, I harbored so much anger toward the midwife and frustration, and guilt. This past birthday (Amber is now 4 years old), was the first birthday that I lost those feelings and have moved forward. I felt different feelings, although I can't say I am totally healed, as I don't know that it will ever happen, but I have moved past the anger and into the healing. I am not angry, but I am thankful that I have a daughter. I cannot change the events of Amber's birth. I have to accept that. I have to let that go, and I have. That is part of my healing. I am thankful that my daughter is healthy in every other capacity except her right arm. It could have been much worse. I know this from my job. I appreciate that and am thankful that I can hold my healthy, happy daughter each and every night as we do ROM.

I post this not to take anything away from anyone else's viewpoint, but rather to just express my own viewpoint. This is such a horrible, horrible injury that I believe IS something that needs to be brought to the forefront of education for our mothers/fathers-to-be and OB/CNM's, nurses, pediatricians. I try to do this through my job as a L&D nurse with doing education at seminars and at my own hospital.

Please, don't see this post as one of me being on one party's side versus another. It is not like that. I just want to express my thoughts.

Hopefully, time will allow the healing process to continue for each and every one of us.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

I really feel for the GOOD doctors who did everything right. But, in some cases it is sooo clear how much they failed. we of course are in legal and would to share everything . but, i promise if you heard my story nothing could make that horrible day go away. My child is my world and i thank God every day he lived. I believe that MORE of americans need to hear about bpi!! I wish we had a louder voice! I am comming to camp and would like to know more if any one knows. I cannot wait to meet everyone who i have been taking advise from thanks

The birthday thing doesn't get me each year..
I think that it's more when certain situations come about - like pants...why should my child have to wear elastic pants...well, he can wear other pants if I want to button and unbutton every time a 3yr old thinks that he has to go potty!
You know like everyone else, therapy..2-3 days per week for the last 3.5 years, time and gas alone....
Don't get me wrong I love my baby and I'd do anything for him, I just get really angry when I take the time to think

So, I don't think about things, they are part of our life just as homework is apart of my school age boys lives.
We deal with things day by day and just thank God everyday that we have a blond hair, blue eyed baby boy!

I can not express enough how important each and every one of you are, I don't post a lot, I have 5 kids, but I do take the time to read what you have to say and the faith and encouragement that you give me is irreplaceable!

THANK YOU !!!
Jamie

It has been awhile since I have been on the message boards and I decided to get on tonight and have been on the last couple of hours and came across your posting.

Our daughter will be 4 in June. I thought I was handling most things fairly well. To give you some background she had a total avulsion of the C6, C7 and partial C8 with Horner's syndrome. She has already had 3 surgeries with more to come.

We also had some attornies that did not handle our case well in the beginning and we had to withdraw.

Recently (in the last two weeks) my husband innocently decided to apply for some new life insurance for he and myself. Although our "financial" advisor (I say that loosely) knew of our ordeal he suggested we could save money. Little did I know I would have to go through not only the routine questions, but all the questions surrounding our daughter's birth. I was also informed they would be contacting my OB/GYN for additional information. I COMPLETELY broke down and needless to say, an arguement ensued between myself and my husband. I am reminded daily of what should have been one of the most special days ever. I LOVE and CHERISE our daughter. She is fantastic with a zest for life. But I will always have PTSD related flashbacks to that day. Somedays are better, some are worse.

Good luck!

bumping up for Breonna...

Let me give another perspective on traumatic births. Let's leave the legal arguments alone for a second; forget about blame for a minute and think about finding a way to view your birthing experience and your child's injury in a way that empowers you both, not brands you as victims. Do you want your child to see him or herself as a victim... or a survivor?

Instead of focusing on how horrible the birth experience was and how terrible it was that your child was injured, think about what could have been worse. If the doctor had to pull so very hard and nurses had to jump up and down on your stomach... your child was very stuck. Now, of course the doctor could have/should have performed maneuvers that got the child unstuck without injury, and not just pulled them past the sticking point. But lets leave that argument in the prevention pages and the courtroom for right now. No lawyer is never going to implore you to be grateful your OB wasn't MORE incompetent than he/she was!

But the truth is your doctor could have done SO much worse than "just" cause this injury. Brain damage, Cerebral Palsy, death. Horrible things have happened to stuck babies. There is a report in the literature of a doctor who decapitated a baby by pulling so hard.... how's that for a really horrible birth with an incredibly incompetent doctor?!

Again, forget about the courtroom, the jury, the defense lawyers. This is about your life and the life of your child. Yes, of course horrifying instances (like the decapitation) of really really horrible shoulder dystocia outcomes are obviously written up to help defend doctors in lawsuits. But they can help us, too, by demonstrating just how horribly incompetent a doctor can be!

Fundal pressure is a great example. No, it should not be used. But what about the baby who was born only after two nurses kneeled on the woman's stomach to push it out? What would have happened in that instance, with a doctor who clearly did not know any other way to get that baby out, if those nurses were not available? Would he have been able to get the child out without that help? What would have/could have happened then? Could the doctor have gotten that baby out? Would he have ripped off its head??

I used to torture myself over Joshua's delivery. In the first year, I concentrated on only what should have been better. Since then, I have become so much more aware of what could have been worse.

It is so easy to torture yourself over what went wrong. But in the end, although having those emotions ripe and on the surface might benefit your lawsuit, it doesn't help you get through this life, and carrying around that kind of anger and grief makes it hard to truly enjoy and rejoice in the child who DID survive such a horrible entry into this world. Because in every BPI delivery represented here on these boards, something DID go right. The baby was delivered alive. For truly incompetent doctors and truly severe shoulder dystocias, that is not always the case.

Kate

I struggle with keeping positive everyday. I try not to let the injury control our life but it affects us on a daily basis. We planned to have only one baby, and we are blessed with her presence but I feel cheated out of a once in a lifetime experience with her delivery. I have grasped the fact the it was not the experience I was hoping for but like others have said it could have been a lot worse. Now, only 8 months later, I am trying to stay positive with all the things that go along with recovery. I mean therapy 2 days a week, doctor's appointments, out of town specialists, it just feels like I am missing time that I would have spent just being a new mom. On top of that, we still don't plan to have anymore so it is time I will never get again. Therapy only lasts 30 minutes but I have to make sure she stays home before therapy so she can get a nap to be in the best mood for it because she HATES it so much. Afterwards she's wiped and its back to the house for another nap. Those days are pretty much dedicated to the injury. I know it won't be like that forever and thank God I have a child to take, but I still feel cheated in a lot of ways.
As far as the birth goes, I honestly don't remember much other that the panic that was rampant throughout the room. As a nurse looking back it was so obvious what was going on but at the time, even with 2 nurses on top of me, I had no clue. After the birth, something was obviously wrong with me. I was pretty much sprinting up and down the hallways hours after delivery. I was showering and changing my bed. I couldn't find enough to do. I felt no pain at all, even though I was cut from you know where to you know where. When we got home, I freaked out at the least little things and my hubby was even scared for me to stay by myself with the baby. I attribute it to PTSD. In a way I am still in denial that there is a problem and have to force myself to stay on top of things for my daughter. To date she has not had any surgeries but it is still a strong possibility and looms around everyday. With some biceps and minimal external rotation, I fight with which avenue to choose. To have the surgery and risk more damage, or to risk missing the window of opportunity to surgically correct the problem. It infuriates me to no end that I have to make this decision when all I should be worried about right now is "Is she gaining enough weight?, Can I start her on meat?, Should I vaccinate?" I am envious of other parents who have these simple decisions to make but act like they are life changing.
On a positive side, when we go to therapy and I see kids with such severe problems I feel blessed to have a healthy baby who can see, and will walk and talk and know God gives us what we can handle. I am definately considering counseling because I have really felt depressed and unmotivated lately and feel it may stem from the birth and everything that comes along with the injury. Ok I have probably rambled way too much but I really liked this thread and had to put my 2 cents worth in.

Ashley, Kayla's Mom, 8 mos. ROBPI

Kate:
I know what you are trying to say. That we should be thankful for what we DO have and not continue to dwell on what we DIDN'T get (a good birth experience, easier time dealing with a child, a "normal" experience in childrearing, etc.). However, it never, never helped me to see how much worse it could have been. My terrible experience is MY TERRIBLE EXPERIENCE. I know a mom whose son fell off his bike and broke his arm. Not an uncommon experience for small kids. She acted like he had been mortally wounded. Cried and told the 'awful story' over and over again. And I stood there at first thinking "what a shallow, ridiculous thing..." and then I realized that in her life, which up to that time had been so "perfect", what occurred was AWFUL. Just because I have dealt with Juliana's issues (and let's not forget that I have a son who was diagnosed with epilepsy at 5 and another daughter who has a kidney ailment), doesn't mean this isn't big to her. I did help her see that scary as it was, her son's arm will be good as new in 6 weeks. But would it have made her feel any better to show her Julie's arm and tell her that it will NEVER be better? I don't think so.

And that is really what you are saying here. I think we all are aware of how much worse this could have been. I think it is much more important to recognize those feelings, accept them. Know that this is awful. It was terrible and frightfully unfair. But more important is to know that we can move forward. That our children will do more than we think they can. When I tell people about this injury and I tell them that bpi is not life threatening but it is life altering, I tell them that the alteration affects everything. And though I tell Juliana that her arm is, in a lot of ways, no different than someone with a big nose or lots of freckles...I know it is vastly different than that.

I think the first 4 years are the hardest. Once the kids go to school, I think things get easier. It becomes easier to focus on the other aspects of your child's personality and you see that they will (and do) have friends.

I also think that just about all parents of injured children should sit down with some kind of counselor and hash this out. There are a lot emotions, and sometimes we just need to say them in a safe setting. And sometimes we need tools to deal with those emotions (like recognizing blame attitudes and stopping them).

And it is okay to be sad and cry. I cried for my son with epilepsy too. And I wept with joy the day he had a clean EEG and had been seizure free long enough that we could start bringing his meds down to "No more meds!!" And I cried in fear that first day he went off to school with no meds in his body for the first time in 7 years. I should have been happy, right? but I was scared too. And as his true personality started to shine and as his schoolwork improved...I was just so happy that we had endured those years. And did my heart break one day when he said to me, a few months off meds, "do you think kids didn't invite me over to their houses to play because I had epilepsy?" I realized that MY boy was back. Could it have been worse? Yes. Are there kids out there with a harder time with drugs than Andrew had? Yes. Did that make me feel better? No. It made me sad for them.

I think we need to ride these waves of emotion. They are okay. Just keep telling your child that you love him or her. Know that you still have decide whether or not to give meat! Embrace that part of the childrearing experience.

good luck,
claudia

claudia,

I am not saying anyone "should" feel anything. I'm saying that, if someone find themselves obsessing about what "should have" gone right to prevent this injury, they might try thinking about what easily could have gone *more* wrong.

In the end, what happened, happened. It is neither nere nor there if it could have been better or worse... it happened as it happened and that is what must be dealt with. It sounds like you got to the point where you were able to recognize "blame attitudes" and stopped them. What I am talking about is a way to do that.

I see so many people only focussing on what hindsight says *should* have been done, and that focus seems to cause so much additional pain. Yes, process what happened and grieve over it. Those are necessary ingredients to healing. But torturing yourself with what the doctor should have done differently leads naturally to thoughts of what *you* should have done differently (as in, choose a different/better/more experienced doctor). For me, it helped very much to accept that a choosing a different practitioner, or an OB and hospital birth (instead of a midwife and home birth) would not necessarily have saved my child from injury, and may very well have resulted in an even more tragic situation. That helped me stop torturing myself enough to move on.

Like I said... I am just presenting a different perspective. I don't imagine that it will make sense or resonate with everyone. If it doesn't resonate with you, that's fine. But I do think it is a perspective that is not seen often enough on these boards, and it certainly isn't one that a lawyer is going to expound upon.

Kate

Kate, I am very glad to hear your perspective. I kind of felt like maybe I was the only one who's life was not comsumed by my child's injury, or at least sometimes that's the way it seems. Others talk about continued horrible emotions several years after their child's birth, post traumatic stress, bad dreams and fear of having another baby. I feel like maybe I am not normal for having moved on. Obviously, that fact that I check this board frequently proves that her injury is very real and a part of our lives, but I do not feel consumed and trapped by it. Do I take every active step to be sure she will improve as much as possible? Yes! Do I sometimes worry about the future, and the problems and pain she may face? Of course! But life on a day to day basis is happy, productive, and above all - normal! I went on to have two other children in the three years following her birth. Alexis is part of a family, and thrives tremendously on her family life and activities. One of the things that really has helped to give us this perspective is simply to see some of the children at Boston Children's Hospital who do not even have the mental capacity to imagine life as normal, much less experience it. While I obviously wish this had never happened to my child, and she, by the way, has had three surgeries with almost no recovery, I am abundantly thankful for what DIDN'T happen to my baby...and life is good.
Amy Clark, mom to Alexis 5yo ROBPI
p.s. I do not in any way by this post wish to make light of the feelings of those who do experience PTSD, or any other problems, just to share MY experience with my feelings about my daughter's birth and following years