United Brachial Plexus Network, Inc.

My son was born with a BP injury. It was a really, really bad birth. He is post first surgery at TCH and is getting ready for his second surgery at Shriners Hospital in Philadelphia next month. Here is what I need help with. I can't get over anything about it. I have been in a constant state of depression since he was born. Every time I look at him I want to die. I know it is not my fault he has the injury. But, I cannot get over it. I was strong for my wife and son during the first surgery and I am trying to be that way now for the second one. My days are getting worse the closer it gets to the surgery.

I know my situation is not unique. But, when I try to talk to people who have not gone through this, they really don't understand. I know everyone here does. Has anyone gone through this for this long a period of time? It gets so bad I have nightmares and can't sleep for days. Besides therapy, how do you handle the pain you feel every day?

How I wish I had magic words to share with you. I also wish I could get my husband to write to you so you could hear a fathers viewpoint. With time he might feel comfortable sharing with others. First of all, I firmly believe that you will have a great experience at Shriners Hospital in Philadelphia. My 8 year old daughter had surgery with Dr. Kozin this past September. She had the forearm osteotomy done along with a tendon transfer. Everything went fantastic. We had gone to TCH in 1999. They were very good also but because of insurance purposes we could not go there anymore. I am extremely satisfied with Dr. Kozin. I learned things about my daughters injury that I did not know. The whole staff is fantastic...from the bus drivers to the kitchen staff to the nurses, therapists, secretaries, janitors and greeters. They all love children and they all do their job with their hearts full of love for the patients and their families. If at any time you have questions about Philadelphia please feel free to email me. I am not an expert, but I have been there and done that.
As far as the feelings you have in your heart...I have been there also, but I do not have very many answers. Granted I have been dealing with this for 8 years. How old is your son? I realise that what I am going to say is not what you want to hear. But, bottom line, we are darn lucky that our children are alive. I know that there is no good reason for our children to have this birth injury. I will be the first one to admit that. So I guess all we need to do is to live life one day at a time and to do the best we can with every day we are given. We will do the best we can for our child on a daily basis. You are already doing that by being in the process of going for your second surgery. I get by everyday by loving my daughter and having fun with her. We do all her therapies daily and try to have fun doing them. We just try to do the best we can everyday. You also need to realize that your child is strong and that he will be given all he needs to get by and to get around. Your child has been given special strengths and abilites to manage. Our children are stronger than we think. Miss Elizabeth just makes every day special and she seems to be the one to give us the courage to continue.
Sometimes I will get down on myself and start crying. Especially before surgery or during a hard therapy session. She looks at me and knows right away why I am sad. She gives me a hug and tells me not to cry for her. She then continues to tell me that she will be fine. Right out of a childs mouth...Do you live in the Philadelphia area? I live in northern Maine. I will sign off for now. Feel free to ask me more questions...I feel there is not much I can say to help your heart, but I can certainly give you tips as far as Shriners Hospital is concerned. Hope to hear from you...Peace and blessings..Louise

How about some counseling? When my child was first born (he is now 5 1/2 years old) I remember feeling very depressed and overwhelmed with it all. Counseling or a therapist is a good idea. Dont feel ashamed or afraid to ask for help till you are feeling better and seeking some type of help. Good luck

Hey, im sorry to hear that your feeling so down. have you told your wife about this? you know that your son wont blame you nor will your wife and no one here is certainly out to blame you. Maybe you feel because you made your baby you are partly to blame but ur tryin to tell yourself that its not ur fault, keep tellin urself that cos its DEFO not! I think your jst a bit anxious about ur sons surgery and don't know how to deal with all ur feelings. Im not a parent...i have erbs, so i dont really know how you feel. Do you feel guilty that you couldnt help your sons birth in anyway? You do realise your son is gonna turn out as the strongest little guy you'll know, dont you? Cos children with erbs seem to go through more struggles(not bad ones, jst different experiences) and they become a lot stronger and have a MUCH better sense of humour than anyone else. He will b able to TRY everythin that his friends try. I have. and ask any of the other older obpi's. Its not really a disability. Iv done swimmin, dancin(still do), football, netball, karate, i now play the tenorhorn, frenchhorn and the piano. OK your sons arm might b worse than mine but hey! Look on the bright side, ur son is alive! He is more than an arm! And you will have so much happy times together as a family, his birth is in the past!
Dont dwell on it. that would depress me too. A therapist would be good too. They're not all nuts you know! lol.

Hope you cheer up soon!

Michelle x

Coming here to vent helps me a lot. Also speaking with a preist or minister might help. Our preist is very good at listening and not saying "I know what you are going through" I hate it when people do that. They have no idea. I guess they are just looking for something to say.

It's almost five years for us and our lawsuit has now come to a close and I finally feel like there is some air and some possibility for moving on a bit.

I highly suggest that you seek out some counseling and maybe even investigate some medication to help pull you through this if nothing else helps. I threw myself into my website, this website and working for awareness to fight depression but being depressed for five years straight is not an easy thing and if there's anything you can do to help yourself out of the hole, please try. Your baby needs a happy homelife for healing - if you can't do it for you, please do it for your child.

I live near Philly - read that you were doing your secondary surgery with Dr. Kozin - where do you live now? I'd be happy to meet up with you. If you're traveling from far- need directions or whatever just let me know - francine@injurednewborn.com

Time will heal most - I don't think it will ever heal all - but I think it will heal most. It's a very sad thing that has happened to our children. As Maia gets ready to turn five - I see such a happy child. What a journey this is.

If for nothing else - just know that just about everyone on this message board understands how you feel and has at one time or still in the midst of feeling the same way you do.

Big hugs to you,
francine

About counseling.... it might be good if you can seek out a counselor who is experienced at working with families who have disabled children... maybe call Easter Seals or Early Intervention....

We had a counselor visit one of our support group meetings - she had a discabled child herself and what she said seemed to mean so much more because we knew that she was talking from her heart - from her own experience and not from a textbook.

If this helps at all - know that the post surgical time - I believe - is the worst time ever.

Will keep you in my prayers,
francine

Dude, I am so going through the same thing right now. Maybe not as severely. My son will have surgery soon and that scares me. Sometimes it hits me things that he may never be able to do and I get the overwhelming sadness and helpless feeling. I hate that feeling. Its not your fault. What I try to do is concentrate on what he can do. He is my little hero and he amazes me all the time. I am going to talk to a shrink pretty soon. I will e-mail with his thoughts. We have contacted early intervention maybe that will help.
Good luck I know your pain.

my husband was just like you, he held all his worries and fears inside him for over two years. He was strong and brave for me and our son and our elder boy.
he carried on working as a firefighter and held the family together. I NEVER knew how bad he felt inside, then he had a stupid, silly accident and had a small hosptilisation of his own and BANG he fell to pieces and after 6 months of not recovering from his minor surgery following his accident, he was diagnosed with clinical depression. He was very ill and I have never been so frightened or felt so alone in my life. I had two babies under 3 and my husband was like a third child. He couldn't wash, dress, eat, sleep.
He went of anti-depressants which didn't suit him at all, after 6 more months I went to our GP with him and begged for help for him. He finally went for counselling. It helped, we went for a year and a bit. He eventually told me that he felt a failure, that he had been useless in the delivery room, that he should have been able to help me more.
I have NEVER felt that - I used to tell him that I couldn't have managed it without him, but he didn't believe me.
Eventually he got better, but he lost his much loved job and took 3 years to retrain into another profession
he's much better now, but we have some horrible memories of the time he was ill.
The reason I want to tell you this is to say, PLEASE don't wait until you are so depressed that you are over the edge. Seek help now - you are not abnormal, your reaction is just what it should be with what you ahve been through, but do ask for help NOW
I wish you and all your family well.

Yo dude.

Thanks for the post. I know everyone in here is going through the same thing, that is why I came here to ask for help. It is a really tough thing all of the familes in here have been through. I need to be strong but it is so hard when I see my son every day not beiong able to lift his arm over his head , or when he has trouble picking up something because it is too heavy for one arm.

Thanks again for taking the time to write.