Looking for some comfort

[Allison]

My 5 week old son Bradley has been diagnosed with BPI. He has started PT. I am frustrated and alone. The PT told me to wait at least 4-6 mo. to see improvement. In the mean time, I guess it's just a waiting game. Do I contact a lawyer? Do I wait to see if there is improvment? I know this injury could have been avoided. That's what makes me so angry. All the signs were there for the Dr. I had gestational daibetes, the baby was breech up until one week prior to delivery, he was 3 weeks early. If only the Dr. would have done an ultrasound maybe this would'nt have happened. If anyone has some words of wisdom, it would be greatly appreciated.

Thanks for reading...
Allison

[Kathleen]

Allison
I am an adult/obpi and I was injured this way 62 years ago at that time the doctors had my Mom start ROM immediately (well when she got home from hospital and found out they injured me) So she started at about 3 weeks old.

I really don't know what to say except you must be in charge of your baby's care. Many health care professional will spout off ... advice and information with out having actual experience with bpi so please check and make sure your PT/drs. are familiar with this injury. If they are not seek out someone who is... check all of the resource pages on this website.

Please go to the Awarness information on this site.
Contact a BPI specialist. I do know that some will accept video for evaluation. I don't know where you live but check the General message board and see if there is a support group in your area.

Time frame for repair, if possible, is important. Are you doing ROM... Has your PT ever cared for BPI injured child? Have you seen a neurologist?
Please do not wait to get your child evaluated by a bpi specialist.
Welcome to the boards.
Kath

[TINA-T]

Allison

I am bilateral obpi, and you are NOT alone.........

We are all her for you!! My heart goes out to you and your family, for as we all know this injury CAN be avoided. Please take Kathleen's advice and visit the General Board, as there are many families with small children experiencing every emotion that you are or will be going through. I think they will be a great support system for you and Bradley. Another very important piece of advice is to TAKE CHARGE!!! DO NOT assume that every Health Care professional knows and understands Brachial Plexus Injuries.
Welcome and Good Luck.........

[m&mmom]

Allison,
My daughter was born with rbpi and recovered at six weeks. My son is turning a year old on Saturday. I was told that they would induce labor and I would have nothing to worry about and things would be different. Well they were - his injury was so severe that it also involved phrenic nerve damage. He was in the hospital for the first month of his life. He had to be transferred to a children's hospital almost two hours away when he was not even two weeks old. Every injury varies with recovery time. I would contact a lawyer right away. I had an ultrasound three days before delivery (two weeks early) and they said he would be no larger than 8lbs. He was born weighing 10lbs 6oz. He had nerve graft surgery in October.
Welcome to the board.
Cindy

[CW1992]

Hi Allison,
I am so sorry for what you are going through. My daughter was also injured and is now 10. I remember feeling so sad, confused, angry, scared - just know that things will get better! You cannot change what happened and now you need to do the best you can to help your son gain movement. My advice would be to do the range of motion exercises as often as you can and encourage your son to use his arm. Make up songs to sing while you move both arms all around and smile at him. Try wrist rattles, different textured toys, different sensations for his arm to feel - anything you can think of to encourage use and feeling in the arm. Believe it or not these exercises will someday be special memories of the bond you two share. You may also want to camcord your son now and record his arm and what he can or can't do so that you'll be able to later compare tapes and see how much stronger he is becoming and how much more movement he is gaining. As far as getting a lawyer - you definatily do have a good case but if I were you I would not pursue that yet. Lawsuits can be time consuming and your son needs you now - lawyers can wait. My child was almost 6 before we started the whole legal process and I'm very glad that we waited. I know it is frustrating to hear that you need to wait to see improvement but at your son's age you do need to wait until he is a few months old to know more - see a brachial plexus specialist, but continue doing the ROM's until his next appointment and they suggest what to do from there. Cherish this time with your son. Time goes by fast and you'll miss him at this age in his life! There are so many good people on this board that can help you. Ask questions, talk about emotions, vent, whatever helps. Christy

[Tessie258]

Please make sure you see a BPI specialist before he is 3 months old. There is a time window for doing the nerve surgery...If you wait too long it could be too late.
Conratulations on your new baby! One thing I got for my son when he was a baby was those little bootie socks that had toys and bells sewn in. It gave him something to reach for while laying on his back. Keep your head up and learn as much as you can from this site. There is a lot of support here.
Love to little Bradley!
T.

[francine]

Hi Allison,

On the home page of this site, there is a button "Information for New Parents" - the information on this sheet will be very helpful for you.

Also - we have a great awareness section
http://ubpn.org/awareness - click on the Birth Injury button - it's chock full of good information

It is important at this time for you to be doing Range of Motion exercises as often as every diaper change. This will keep you sweety's joints supple.

Let us know where you live so that we can tell you if we know of a brachial plexus specialist in your area. It will be most important for you to find a specialist.

At four months of age what they look for is HAND TO MOUTH WITHOUT THE ASSISTANCE OF GRAVITY... what this means is that Bradley has to be sitting in his high chair and he has to be able to bring his hand to his mouth in that sitting up position.

You should be seeing improvement as the days go by. If at two months there is no movement at all whatsoever - you will need to contact a specialist right away because this will be a sign of a very serious injury. On the other hand - there is a lot of hope because somewhere between 70-90% of the kids injured do have spontaneous recovery.

I know you are angry and upset and you have every right to be - but I think you will need to wait a little bit at least to see if Bradley gets hand to mouth or not - if he has the need for primary surgery, then you know for certain that it is a permanent and severe injury. The attorneys need something to go on first though.

It's a tough time - the waiting is hard and we are all here to help you through this time. Keep on talking to us - keep on asking questions and educate as much as you can about this injury. You will need to become your child's advocate and you will need a lot of strength and understanding about the injury to do this.

big hugs to you,
I'm sorry your baby was injured

-francine

http://www.injurednewborn.com

[admin]

Alison, hi my daughter, Tiffany is 18 and is left obpi I was so sorry to hear about your new baby being injured. That must be so frustrating. Unfortunatly no one ever told us about R O M exercises, untill Tiff was about 4 yrs old!! My second child was born with a broken collar bone, luckily he had no nerve damage. Needless to say my next three children were deliverd by c-section. I would say do everything you can for him legally it sounds like in your case someone needs to be accountable! Well Alison give your kids a kiss and a hug for us all, they grow up so fast! My kids range in age from 18 to 8. It seems like yesterday they were so little! Best wishes, Crystal.

[admin]

Hi, this is my first time on the "message board" but I am in the same boat as you as they say, but my daughter is 5-years old and I too believe this was preventable. When my daughter was born, her left arm was virtually paralyzed. Her doctor was more concerned that her shoulder was broken than with the injury that I only learned the name of 2 years ago. I was very nieve, I had never heard of this injury before. So when my daughter was born they made me believe that it was something that she would grow out of. When we left the hospital, I was told that she would begin to have movement in her arm in a couple of weeks. Well, when we went for our doctor appointment, there really wasn't any change. I asked if my daughter could get a referral to see a specialist, but her doctor instead had a PT evaluate her and they thought it would be in my daughter's best interest to start PT so we started ROM exercises and monthly visits to the PT. I trusted my daughter's doctor to know what was best for her. That was my biggest mistake! Well, that went on for about 6 months and then I was sent to another PT and so on. Then my daughter's doctor left the state and I had to switch doctors. That is when someone finally told me the name of this "injury". Because up until my daughter was 3-years old no one bothered to tell me this was a REAL medical problem. Well, her new doctor sent her to an OT and that is when some progress was made, but after about 3 or 4 months there really wasn't anything else that could be done, so I was told. That is when I finally got my referral to see a specialist (after 5 years of PT and OT), and the specialist at Children's Hospital in Los Angeles looked at my daughter for about 5 minutes and told me that she should have had surgery when she was 3 months. Well, now she is on a WAITING LIST at Children's Hospital for in my a opinion a traumatic surgery for a 5 year old, which could take up to 7 to 8 months to have. I am angry and frustrated and every other emotion there is, especially GUILT!!! for not doing more. But, now my husband and I know what needs to be done and we will do it. And we are also in the process of seeking legal counsel against my daughter's first peditrician for negligence. Because I truly believe that if my daughter would have seen this specialist when she was born she would be a happy healthy active 5 year old with very little care in the world....
So believe me when I tell you I know what you are going through, keep your chin up and my thoughts and prayers are with you and your son.

[Bridget]

Hello Allison,

Welcome to our community, I hope you find lots of support and information here.

Please visit the "General Message Board" also, as most of the parents of small children tend to "gather" and post on that forum.

Best wishes,
Bridget