New parent -copied from tbpi board

[Kathleen M]

I saw this on the tbpi/adult board and copied it here so that she could receive some help.
Kath


Please help me help my baby! SusanLynn Posted: Feb 1, 2004 5:38 PM Reply

Hello,
I am a mother of 5.? We have 4 boys, and then Veronica was born 7-9-03.
Veronica?has Erbs palsy.?
There are complications.?
I was told that her entire deltoid muscle and rotor cuff has not been used since birth.? She has had a broken clavicle as well.? She is now nearing 7 months old.?
The complications that are confusing her doctors is that she is in a great deal of pain when her scapula is moved.? I am told that pain is not a symptom of Erbs.
Her MRI showed an enormous abnormal mass with edema all through her entire shoulder girdle.? Yes, the whole thing.? One doctor said it looked like fibrotic muscle.? It is deep, and appears to be mixed in with her muscles, both sides of her scapula, and it (today) is outside of her ribcage.
WHAT IS THIS????
9 hours after she was born, the nurse who bathed her brought these large reddish purple marks on her back to our attention.?They extended down her post?left arm.? The one on her arm looked like a perfect adult thumb, only it was upside?down.? The one on her back was covering her entire left scapula area, and then some
The hospital pediatric specialist saw her the next day and told us it was a congenital hemangioma nevus.? It was not and never has been raised.??
She explained that it would probably change color, shape, and then most likely go away before she turns one year?old.? When I asked what caused it, she said probably hormones.? And assured me not to worry about it.
No one told us her clavicle was broken.?
Her pediatrician looked concerned, then gave her a blood test.? He told me not to worry about it.? I asked him several times what is it, what caused these marks.? He never responded with an answer other than "I told you not to worry about it.? It's nothing.? If it doesn't go away, when she grows up we'll talk about cosmetic surgery.? There's nothing to worry about now."
Guess what.?
There are all kinds of things to worry about now!
Today, at nearing 7 months old, the mark is still there only it is smaller.? It is now 3cm x3cm.? It is in her scapula area, and if you want to hear a little baby give a piercing scream... press on it ever so slightly.? Something happened to my baby. Something happened to my baby
Time is running out for any urgent nerve repair surgery. I don't even know who could do it. And this large mass in her, seems to be in the way of any treatment AT ALL. Is it possible that this huge mass is all part of her same injury???
My question-s is/are:
Does anyone know what has caused this mass, what it is, will it kill her, is there any hope at all for helping her nerves.? Can I still help her atrophied deltoid?? How???? I don't know what kind of doctor to see next.? what kind of life can she expect?? What will be her obstacles?? Even the small ones.? Naturally I have several more questions, my main one for now is:
Who else anywhere has had this similar experience with pain or mass, and what do we do next?? Please help us

[Francine_Litz]

Kath -thanks for posting this - this mom also emailed me so I will be calling her.
-francine

[Kimmie]

I will pray for your baby as well as your family.
I have a 10 yr old daughter with erbs palsy. I wasn't told about nerve repair surgery, or it wasnt done in 1993. I only wished my child could have had it.
Everything I've read. Say's for best results have surgery soon as possible.
My daughter Haley has c-5 and c-6 palsy, She has a mark on the side of her neck, it's about 3 inches long and 1/2 in wide. It could be compared to an index finger, but reddish/purple in color. However, it is not raised or tender to touch.
I dont really know anything about the mass you mentioned.
I have heard wonderful praise and outcome from Dr. Nath at Texas Children's Hospital. I have also been told you can contact him by email or phone.
I was told also there is free airfare available.
You can send Dr. Nath a tape and he will evaluate your child that way.
Dr. Nath's email is rnath@bcm.tmc.edu
He's very email friendly - will answer any of your questions.
He also has a website http://www.brachialplexusinjury.net.
Information about medical travel http://www.injurednewborn.com/maia/travel.html.
I hope any of this information helps. I was given this info by a very kind lady named Francine.
Keep in touch,
Kimmie

[admin]

They did not know my sons exact BP injury and did surgery at 71/2 months(now11 months). They did not know untill they went in there what it was for sure. They took a golfball size scar mass off his C5 ^ nerve. The nerve was then hanging by a thread and they put it together without a nerve transplant because it was barely but still attached. I am not sure if you call it primary surgery/exploritory? but they did not know. Your child should not be in pain after so long. My sons bed (in the hospital) said he had a broken right clavical so the nurses etc. we aware to hold him special. Maybe they were not aware of yours and held your baby wrong. My sons arm was tucked in his shirt. You should have been told about the clavical because it was painful for months w/ my son. I know it was the large mass in his arm. YOu coul feel it.

[Karen Hillyer]

Hello
I am sorry that you and your daughter have so much to worry about at the moment.
I live in the Uk and have a 12 year old son who ahs a right Erb's palsy.
In our support group we had a little girl who was also born with congenital hemangioma naevus - hers was in her oesophagus and for a while she had a tracheotomy to help her breathe. She had some laser surgery to shrink the naevus a little when she was a baby.She's almost 7 years old now and very beautiful.
I think it is essential to get your baby to a BPI specialist as soon as you can, they will have many answers for you and will give you the reassurance you need.
There are many specialists listed on this website -
one of them will be able to help your daughter.
I wish you lots of luck