United Brachial Plexus Network, Inc.

I have never posted anything before - I usually just read everything that everyone else posts and soak it all in. My daughter was born just over a year ago with ROBPI. She was 10lbs 3oz - 10 days early. I was in labor for so long & the doc suggested that we do a c-section since it was taking so long. I was so scared of being cut - I begged him not to. The issue was about time --- not that there was a problem with my daughter. Of course if I knew that this was going to happen, I would have gone with the c-section. Deep down inside, I know that I didn't do anything wrong - but when does that guilty feeling go away? When do I stop crying on a regular basis thinking that I did this to her because I was being selfish?

Now she has already gone for surgery twice at TCH. She had the primary at 6 mos, and at 12 mos (in May) she had the Mod Quad & the Caps & something else to fix one of 2 dislocations in her shoulder. They said that she might need to go back for another surgery when she is 4 or 5 years. She is doing great now. Getting a lot of strength back, but what is coming in the future? How many more surgeries for sure? How many years of therapy? We have a lawsuit and the hospital is questioning settling, but how can you predict the future of what she is going to have to go through? And how do you put a value on that?

I guess I just need feedback from people that are either going through the same thing or have gone through it. My friends try to be supportive, but they really have no clue what I'm going through.

Thanks - Carrie

Dear Carrie,

I have a 19 year old, LOBPI daughter. Since you've been reading, then you probably know she was my 3rd. Each of my babies got bigger by one pound & 1/2.

I did not know anything like this could happen either. With my 2nd, I was severly injured and received 2 units of blood. But at 9# 2 oz, she had only a deep black & blue bruise all over her face. The nurses said I was injured and she so black & blue, because she came so fast.

When my Jill came she was 2 1/2 weeks overdue. I have very fast labor, and he delivered all 3. Knowing how large & what happened with my 2nd, only 3 days overdue, he still said babies come when they are ready. He did not offer me an option to have a c-section. However, I like you, not knowing any different, probably would have refused. I don't like the idea of surgery either.

For me, I kept telling myself, I should have known better and forcefully demanded the doctor induce me, since my second was so large. I felt I should have known that going that long overdue, would have produced an even bigger baby, than the second. So thats the guilt I live with. I also sometimes feel guilty now, that I never sued. Especially, now that I recently found this websight and see that Jill might develop more problems later.

About your guilt. As time goes on and your baby improves, I think it will diminish some. However, It will probably always be there a little. I used my guilt and anger to motivate me. Not a bad thing, although as you realize, very painful. I cried a lot too. That gets better too.

I now celebrate my daughter's successes, and there are many. I was so afraid for her future. I also was very afraid she might be teased at school, but that didn't happen either. Our hard work and determination, has paid off. She has a wonderful boyfriend of 3 years, and I do believe they plan to marry as soon as she graduates from college, as a K-12 art teacher.

As with any of your children, try to recognize her strengths, and run with it. My Jill couldn't take Piano, like her 2 sisters, but I could give her private art lessons, because she drew with a passion. Now she plans to be an art teacher.

About therapy. Of course that will be different for everyone. For us it went on for years. At times Jill hated me for it, but we just kept going. At times we did take a break from it. Sometimes, I was so busy, it just couldn't be done, and I had to forgive myself for that too. Of course, having a break from therapy now and then, is necessary, I believe.

Also about guilt. I have 3, and for one reason or another I think there is always something to feel guilty about. I think just being a mom, is one of the hardest things in the world. We have to be Highly Trained Physicians, Educators, Activity Directors, etc. and frequently work full or part time too. Impossible to do, but seems to go along with being a mom. Please forgive yourself. It takes practice. I'm still practicing, and I'm 50 and my kids are 19, 20 & 22.

These are only my thoughts, and opinions.

Carrie,

I have two children that were born with rbpi. Melanie is turning 4 Monday (recovered at 9 weeks but still needs to be stretched) and Matthew almost 2 1/2. He's still on the road to recovery and is going for his third surgery next month.

I switched ob's and was going to have a c-section until he decided to send me to a high risk ob just for confirmation. Well the high risk ob said that I have nothing to worry about and he would not recommend a c-section. So my ob said that he would induce me two weeks early to ensure that I don't have a big baby. Well two weeks early I delivered Matthew weighing 10lbs 6oz. I also had tons of guilt for the longest time. I don't think it ever goes completley away, when I start to feel guilty now I just think about how Matthew was brought into this world with this injury for a reason. Our family has changed for the better since all of this happened. What helped me move on was accepting that we have a child with an injury and forgiveness. I think I cried everyday until Matthew was released from the hospital at one month old. We can't predict the future for our children or ourselves, we just have to hope for the best and keep rom-ing.

Our lawsuit settled and I can tell you that no amount will ever be enough. You just have to hope for a fair settlement. We settled for our minimum amount because the ob med/mal insurance company is going out of business and if we would have gone to trail and won we probably would have never seen payment.

Cindy

Hi Carrie,
I've read on a doctors website that the advent of c-section birth practice has not decreased the number of people born with brachial plexus injury. This may mean that even with c-section births, bp injuries sometimes occur. Things happen and sometimes it's really not in or control even if it seems to ourselves that it was in our control. I hope that all goes very well with the physical therapy. Best wishes!

Carrie, please don't "beat yourself up" over decisions made during delivery. In hindsite, had any of us been informed before the birth of the risks (shoulder dystocia, bpi, etc.)by our birth practitioners I think many of us would have calmly and rationally made other choices...before the emotional birth event. You're doing all you can for your daughter; you're a good mom.

My daughter is 5 now & had 2 surgeries at TCH. Therapy is a part of her life and I plan on it being lifelong. As I see her grow up and become a person with her own life I focus (obsess) less on her injury. She has attributes that will help her through tough situations and she'll always have her family's love and support.

If you ever get a chance to attend a bpi gathering/picnic, try to talk to the older (teenagers) children. I find great comfort & encouragement in their experiences and "matter-of-factness" about their injury. It's part of their life, they deal with it, and they don't dwell on it.

Enjoy your little girl!

Hi Carrie.

I could have written your post exactly. I have Sarah, 8 months, ROBPI. During my delivery, they started to prep the OR for the c-s, but I begged them not to. Every single day I cry inside because of that choice. Sarah was not a big baby (6 lbs 7 oz.), so the possibilities of shoulder dystocia or BPI were never even mentioned to me.

I can't say that I can help you with the length of therapy because I asked our OT the same thing just last week. But, I just wanted to let you know that I can totally sympathize and completely understand your feelings.

Cherie

You ladies who argued not to have a section, I want to remind you that there was a risk of severe injuries/complication happening with the sections also, you may have made the right choice, you never know what would really have happened, it is what it is, do the best we can NOW! thats all anyone can do, if you can always do your best you should be proud!

i guess that no amount of second guessing will change what has happened, and it was you doctors responsiblity to inform you of what might have occured the fact of the matter he/she might not have even considered that the baby might be too large, it seems to me that so many are so caught up in being right that they fail to listen. it is so frustrating for so many of us because even though the circumstances are different we feel that we should have known. but we can't know everything that might potentially happen. it is only because of this injury that i now know so much about it, think of all of the other potential problems that can occur with birth. that is why we use a doctor in theory they should be aware of problems and be able to forsee them and avert them. that doesn't always happen though unfortunately.
i am really sad right now because my doctor is claiming that he did offer a c-section to me, well not officially but he has leaked it out in the community in an effort to make me seem like the bad guy. its hurtful but what can you do? i know it is not the truth and hopefully down the line others will also know the truth.