United Brachial Plexus Network, Inc.

I was wondering how all of you deal with your anger towards the doctor and the whole situation of having a baby with a preventable injury. Although my 3 month old has recovered some movement and could be worse off, I'm still finding that I spend a lot of my day feeling mad. It's also extremely frustrating for me to have people stare and ask questions, but then not really care to listen to my answer about what's wrong with my daughter. It's also frustrating when people downplay her situation and act like I'm making a big deal out of her injury. Does anyone have any suggestions on how to deal with these feelings and these comments from people?

Hi Teresa
I am Mum to Gavin who is 11 years old now. I remember feeling JUST the way you do and being angry at EVERYONE!
I think I spent the first couple of years being angry and frustrated and then when Gavin got to about 3 years old and he had had two operations, I realised that I hadn't felt so angry for a while.
It was a gradual process and it wasn't easy, but as Gavin got older and I found that he could cope with everyday life to a great extent, I started to relax about his injury a little.
I think that a lot of my anger was also fear for how my baby would cope with the outside world and how people would treat him.
When I saw that he was an independent little chap who wanted to try everything and to do things for himself, then I sort of got used to the injury really.
I still feel a great sense of sadness that my child has had to suffer so much in his life, but he is a great boy - independent, funny, loveable, charming and very mature for his age and I know that he will get on in life in spite of his injury.
People will ask questions, they are curious, but if you feel up to giving them a little information, then you never know what you might learn as well as them.
If somone hadn't asked my Mum what was the matter with Gavin, we would never have discovered that there was treatment available for him. it was only when My Mother was telling somone what was wrong with his arm that the lady who asked the question said " oh yes, I've heard of that, my boss's daughter has that condition - she's just had an operation to fix it"
So remember, sometimes information can be a two way street - but don't say more than you want to.
As for people downplaying the situation, sometimes they do it because they are trying to make you feel better - and also because they don't know much about the condition.
I hope this will help a bit Teresa - I know you won't believe me, but Time IS a good healer and as you baby grows and starts to achieve things for herself, some of your worries and hopefully some of your anger will go.
I hope this helps
Karen

I’m an OBPI victim and have 2 grown sons. I can’t imagine how I would have reacted if either of them had been injured like I was. I know that my parents were devastated by my injury. My Mother, who turned 94 last November tears up when we speak of it. Knowing my Dad, he would have liked to give the delivery doctor a good beating. However, my parents soon focused on working to achieve the maximum possible recovery for me which was achieved by my late teens. I have previously written in the forums about the sacrifices they made to make that happen. I’ll be forever grateful.

I suspect that, like Karen, your anger will be replaced by the will to achieve the maximum possible recovery for your daughter. If my experience is an example, you’ll find that she’ll learn to cope with her injury but how well she copes will likely be influenced by how well you do. My parents always treated me as they did my siblings; with love and respect without undue attention to my injury. They encouraged me to participate in activities with my friends knowing that I would be physically challenged. They helped me to receive the education and training that has enabled me to lead a productive life. As your daughter grows and matures, she’ll recognize what you did for her and be grateful for it.

John P.

Hi Teresa,
Hope you are doing okay. Let me begin by saying that this will last a while for you. It is normal to feel this way. For me, I actually couldn't keep myself from crying my eyes out during the first few months. They were tears of anger, fear, disgust and most of all b/c I wish I was able to turn back time and understand what Erb's Palsy was and its risk factors. Still to this day I have people who are close to me and my family who think this injury is something that will just go away. Nobody will ever understand what us moms are feeling unless it happened to them. I would never wish this on a worst enemy so that should say something about how we feel. You know what I did to help deal with my sadness and anger? I wrote a poem for Mariella. I also keep a journal for her explaining everything from birth to holidays to appointments with her specialist to just anything that I feel like telling her at that time. It really does help b/c I am not holding anything in. Get involved in Awareness. There are never enough people to help with that.
I know its hard...it may even get harder for a while. Especially when you get her in her helmet. The first few days will seem unreal and you will feel depressed. Of course, remember you are doing the best things possible to help her though. I am still angry, sad and who knows what else. I just learned how to deal with it over this past year. I wish you luck and hope you can feel better soon.
Big hugs to Mackenzie!
Krista

Dear Teresa,

My son is now 2 months old and just barely started phsical therapy, for his PREVENTABLE injury. He was 11.1 lbs at birth and has been diagnosed with erbs palsey. The people always act like im making too big of a deal of this as well but dont worry about what they think. This is your baby and they couldnt possibly understand. Your doctor needs to learn from his/ her mistake. These are healthcare professionals and should have known the outcome of your delivery. I dont know about you or your family, but we have inlisted the help of a very qualified attorney las vegas to sue my obgyn. This injury could cost my son his left arm, its almost like having a baby born with no arm. We owe this to our children. They may require surgery, physical therapy, plus all the pain and embarrasment. Its just not right to let the doctor go without them knowing how this has effected your baby and your family.I have found that this helps me with my anger. I cant understand why a doctor would even chance a bp injury. And why he would have hurt my son with no remorse. I just keep hoping and praying that he wil learn his lesson and my son will recover. We hope this helps you, e-mail with any questions.

This is a really good topic. Yes, I am angry. I can't stand to think about that doctor still delivering babies. How many has he done this to? How could he not know that Sam was going to be so big? So many questions and no one to answer them without looking at me like I am over emotional woman. Ugh! I don't get comments from people so, I am lucky in that way. One thing that I can say is that if it wasn't for Sam's therapist, I would have lost it. She is a great support and so is my husband although he thinks that I get too emotional sometimes (guys sometimes don't understand the maternal thing). With therapy, I have noticed that Sam's arm has gotten better but we at one point, had a doctor tell us that on a scale of 1-10 (one being the least damaged and ten being the most damaged), Sam was a 9. So, where does that leave us? Asking questions up the wazzo! It gets better, Theresa. Honestly, it does. Sam is 7 months now and I find myself watching him adapt to life around him and he is catching on (although a little slower than most babies because of the injury). It is a little comforting.

Hi, Teresa. My son is 5 weeks old and went through so much when he was born. He was without oxygen for about 4 to 5 minutes and because of this had seizures that made him stop breathing twice. It was very scary. His right arm is the one with the injury and his left arm had to be broken for him to come out. We had so many prayers and we really believe God healed him and continues to heal him. When we finally left the NICU the doctors and nurses were all so happy and seemed surprised at his recovery. I really think they believed the worst and didn't want to share it with us. So, for his recoveries we are grateful and praise God. But, his arm is still limp (some movement of fingers and wrist and shoulder) and it makes me so sad sometimes to watch him move his left arm and see his right just hanging there. It's upsetting at times to see other babies moving two arms and mine just moving one. There's a lot of anger and sadness there so I understand. And people do downplay it. Mostly, I have to believe, because they don't understand the injury. Who really did until it happened to them? A lot of people will say, "Oh, how's his arm? Don't worry, it'll get better." Like it's a scratch. I don't know if you believe in God but He's where my strength has been. Lots of prayers and lots of crying. And places likes this. And, don't forget to stay real. Don't hold it in. Find people who will let you be real.
All the best, Sarah

Hi Teresa,
Something that really helped me was my concern that my anger would somehow be sensed by my son. I concentrated on sending him positive vibes while we were nursing, such as, "You are beautiful and strong, you can do anything you want to do, etc." The idea that I might make things worse for him by letting him sense my negativity was enough to rise above those feelings except in safe settings, like with my counselor. Yes, I saw a therapist to deal with the stress! Julie

I got past the anger when I gained acceptance and forgiveness. I'm not saying that I never get angry anymore but it passes quickly. About people asking questions - I just simply told them that my child was injured at birth by the doctor. If they asked more questions I kept answering or if that's where they wanted it to stop it did. It takes time to get over everything. The sooner I saw my son as a child with an injury vs. an injured child made a big difference in my ability to move on.
Cindy

I can't say that you will ever get past the anger, I can say that it does get easier. My son was born too with this preventable injury and that makes me angry. It also makes me angry that the same doctors have done and are continuing to do this to other innocent babies. My son is 4 1/2 and I am getting better, therapy, yes, it always helps. My child had two surgeries at TCH and responded weel, very well to both. He had extensive therapy at TCH itself since we moved ther for a year. It was so awesome. My son withhis severe injury has probably gained a little more than most here. i was a fierce fighter for the earlier the better. Therapy at two weeks, first surgery at 7 months and mod quad at 14 1/2 months. I was too mad at first, but still found the energy to fight anyone who stood in my way in getting my son the care he needed. It was a long road. For me at least it took me 3 years to talk about it without crying. I do still get a little angry but I just think of the things, the road blocks my son has overcome. Eventually, the happy things, the road blocks your child overcome will over shadow the anger and you will be able to smile and say, it'll all be better. Good luck and try to smile !