United Brachial Plexus Network, Inc.

I was told that my daughter who was born sunday has brachial plexus. She was born vaginally at 10 lbs 10 oz. She cannot move her left arm at all and can only move her wrist and hand but isn't strong movement. I have looked at finding a pediatric PT/OT for her and also a craniosacral therapist.

Is there anything else I should be doing for her?

Also, I saw some mention of getting disability through the government for this????

Is this an automatic or just in some cases or what do I do for it?

Welcome Tess, I'm sorry to hear of your daughters injury. My daughter was injured in the right arm, but had the exact same movement you mention. I can tell you how she is doing now if you want to know...

Some states (we live in MA) have Early Intervention which is therapy (PT, OT) that doesn't cost (or has a very low yearly cost to your family based on your income). My daughter gets OT every week from Early Intervention.

Definitely find a specialist for BPI's (brachial plexus injuries). Whereabouts do you live - we I(on the board) may be able to give you recommendations about who you can see.

We initially saw a Rehab Doctor in Boston as well as a neurologist. Then we started seeing an orthopaedic surgeon as well. We've done PT and OT and of course stretching and such at home.

Did you daughters doctor mention that you cannot hold the baby under the armpit... EVER. This can cause further damage to her nerves. I always like to point this out as it's a biggie! I remember how scary and in shock my husband and I were after my daughters injury - if you have any questions please ask - everyone here is wonderful supportive and helpful...

So sorry about your little one but I am glad you found this site. You can learn so much here. Just take time and go thru all the info for new parents and read everything you can get your hands on. Look at the medical directory and find a BPI specialist close to you and give them a call. Contact your states Early Intervention program or Birth to Three (they are called different things in different state), your pediatrician should be able to tell you more about the program. You need to learn ROM (range of motion) exercises and do them a few times a day. This injury is such a hard wait and see injury...especially in the first 6 months. It is a good sign that your daughter has wrist and hand movement. I have a 3 yr old with a good recovery. She had slight hand and wrist movement at birth and could shrug her shoulder. She started moving her arm around 10 weeks and continues to improve today. Best of luck and your found a great place.
Terri
Where are you from, maybe someone on this board is near you?

Diane

First I would like to off my best wishes on the birth of your new little girl. I am so glad that you found us so soon because information and education is very important. Please go to the Home page and read all the information for parents of newborns.

I am sorry to hear that your daughter was injured. I feel so bad everytime I read of a new baby injured.

I am a birth injured adult and I thought this injury was rare. I was under the impression that I was the only one with it, until I found UBPN almost 6 years ago.

This is a very emotional time for you and we are all here for you to support and encourage you.

Kath (adult/obpi)

Hi Diane, I echo what has already been said. I am mom to, my youngest Jill age 21, born severe Left OBPI. I and my oldest daughter are going out the door in a few minutes to see my Jill as a bridesmaid in a wedding this afternoon. Here injury has not held her back....just wanted to let you know that too. Angela

Welcome to the board. Congratulations on your new baby! I am very sorry to hear about your daughter's injury. I also have a daughter, Mariella, who is 3 1/2 years old. She has a LOBPI and had great recovery up until she was 2 years old. She did not need nerve surgery, but at 2 years old her MRI showed that her shoulder was dislocated so we decided that secondary surgery was a must.
At birth she had finger and wrist movement, but NOTHING else at all. As time went on during the first month she was showing some signs of shoulder shrugging. She finally achieved hand to mouth around 3 1/2 months old. This injury is so different with each child that you cannot compare what you read here to your baby. You can learn more and get new information on a daily basis, but please do not read something and say, "oh that sounds like my baby so I think she will need surgery." That is not the case b/c anything can happen so keep your hopes up.
A brachial plexus specialist will help you determine the extent of the injury. They will lead you in the right direction as far as treatments and what you can do to help your baby. For now, do as everyone has told you. Make sure you do ROM exercises and do not pick the baby up under her arms. Keep the arm secure when you are holding her and don't let it hang. Do you ROMs at every diaper change so you will be reminded. You are at a very early stage so it is hard to say what may or may not happen. What you need to concentrate on NOW is finding that therapist and getting that appointment and find that BPI specialist and getting that appointment as well. From there you can go on slowly.
Also, about the disability from the government. This isn't the right time for you to try to get this benefit. (in my opinion)
It takes tons of medical records, sometimes a medical exam by their doctors and a lot of answers to questions that you do not have the answers to yet. Such as, can the baby roll over (no b/c she is a newborn) can she crawl (no b/c she is a newborn)...
and many others that you will not know the answer to until she gets a little older and see how the injury is affecting her.
Give it some time and figure out the extent of her injury and then I suggest looking into the SSI.
You have a lot of time and at this early stage of her life you should concentrate on getting your doctors and medical appointments together. Best wishes for a great recovery! Keep your chin up!!
Email me if you have any questions for me.
Ldybug4134@aol.com
~Krista~

Hi Tess's Mom,
Congratulations on the birth of your daughter and I'm sorry to hear of her injury.

I'm Cindy mom to Melanie (almost 6) and Matthews (4) both have injuries to the right brachial plexus.

Melanie could only move her wrist and fingers when she was born. I'm happy to report she is diagnosed with a 99.9% recovery.

Matthew has a permanent severe injury. We have done a wide variety of alernative treatments for him from acupuncture to reflexology. You can read about our experience at www.franklinfamilybpi.com. I would also suggest adding a bpi specialist, including a neurologist to your team.

We could not get disability for Matthew as our income is too high. You could contact your local Social Security office and fill out an application to see what happens. You can also contact your county assistance office to see what other services may be available to you.

Cindy

Hi Diane,

I just wanted to say hello and welcome you to the message boards. This is a place to come and share and ask questions. Keep in mind that those of us who participate in these boards are sharing from our own experience and what we say should never be construed as medical advice as we aren't physicians.

But you will find a huge groups of folks who care and understand exactly what you are going through. We share our laughter and our tears as we journey through living with this injury.

UBPN puts out a magazine, called Outreach, that is printed twice a year, and it contains articles written by medical professionals and stories by and about families and their experiences. There is no charge for Outreach and if you would like to be added to the mailing list, just email me (nancy@ubpn.org) and I'll send you some back issues and add you to the list.

Nancy Birk
UBPN President
LOBPI, 51 years.

Amy,

I have heard the "don't hold under the armpits" advice many times... but only from parents on this board. My son has seen multiple therapists and 5 different doctors for his injury (including two top names) and they have ALL picked him up under his armpits. This *cannot* cause additional stretch or injury to the nerves, it isn't even in the same direction as the initial stretch. It *may* be uncomfortable for the child and *may* not be good for the shoulder if the shoulder is fully paralyzed and cannot resist the motion at all. But these kids usually have good adductors (muscles pulling the arm down to the side) so all picking them up under the armpits does is stretch the (strong) adductors.

What may apply in rare cases is not necessarily the best thing to advise every parent. Many kids get adduction contractures (where the arm can't be raised out to the side) so easy and so early on ... I wonder if it isn't partly because of this recommendation.

The best advice is to listen to your doctor.

Kate

I'm in the metro Detroit area of Michigan.

Thanks for all your input and experiences. I'll check back soon.

Diane