United Brachial Plexus Network, Inc.

My name is Jennie.

I have a son named Douglas (8 weeks old). He was injured during his birth and can not move his right shoulder, arm or hand. We have an older daughter who is turning 3.

I'm having a hard time figuring it all out. And I suppose I don't have to figure it all out at once--that's my problem. I guess I should concentrate on meeting his needs now and worry about how to inspire his confidence later.

He cries all the time. I think he's feeling pain... but I know he's not feeling anything in his right arm. I try to do range of motion on his arm when he's not crying... but that's only when he's sleeping or in the sling or nursing (and even then, he often pulls off the breast to cry).

Anyway-- I would love to e-mail or even meet other people who are going through or who have gone through something similar.

Jennie
jennie-brad@hvc.rr.com

Hi Jennie,

I have a 15 week old baby boy named Joshua. He is my first. I would be happy to correspond. My e-mail should be shown above (?).

My first advice is to make sure you are seeing a specialist who knows the full treatment range of options. We didn't discover until Joshua was 8 weeks old that the orthopedic surgeon we were seeing "didn't believe in" primary surgery because he thought it was only done at TCH and he had a negative opinion of TCH. I informed him that primary was done at quite a number of places, including at least three in California, and was commonly accepted (the only debate seems to be in deciding who will benefit and when to do the surgery).

Besides having Douglas followed for possible treatment options later, you want to make sure he didn't actually have broken bones or dislocations that need to be addressed separately.

That said, I do think Joshua experienced a lot of pain around 2-4 weeks old. I think the muscle damage that can occur during such a traumatic birth is highly under estimated! If the neck area is stretched enough to tear nerves, it certainly is going to strain and possibly tear muscles as well.

In Joshua's case, the muscles in his neck that turned his head to the right were injured - his sternomastoid muscle on his BPI side was injured along with some muscles for turning his head in his back. His head was twisted during the birth enough to tear these muscles, resulting in a torticollis or "twisted neck". They were probably painful at first, then they scar up and heal, then around 2-4 weeks old the scar starts reabsorbing and the torn muscle pulls back together, which causes tightness and (in our case) real discomfort. At the same time, he really started fussing whenever we did his range of motion stretches, too. I think it was all related.

Our orthopedic surgeon specialist finally told us about the condition and recommended stretches for those muscles (at 5 weeks old).

Joshua HATED HATED HATED the neck stretchies and ROMS when we first did them, but the doctor was adamant that if we didn't he would be in even more pain and discomfort. So I put in earplugs and stretched him every three hours by the clock for four days straight - 8AM, 11AM, 2PM, 5PM and 8PM. During those first four days Joshua screamed whenever I went to pick him up, didn't want to be held, stopped gaining weight (because he didn't want to be that close to me to eat... ) and was REALLY REALLY unhappy. But, miracle of miracles... on the fourth day suddenly they didn't hurt anymore. Suddenly he stopped fighting the stretches and relaxed. Suddenly he started falling to sleep while I was doing them. The muscles loosened up, he got the range of motion back in his neck, and he wanted to be held again.

There may be olther real things causing Douglas discomfort that are also a result of the traumatic birth. The nerves can also give off weird and possibly uncomfortable signals as they heal. And as Douglas gets more and more use of the other arm, you may notice some baby "frustration" with the arm that doesn't work. After all, their brain EXPECTS that arm to work - it worked in utero, after all.

And don't underestimate your emotional state in all of this. For a long time, I couldn't nurse Joshua without crying on him... They pick up on that, as well. And the more unhappy he seemed, the more sad I got. It was a horrible circle. And when you absolutely MUST do painful or uncomfortable things to your prescious little boy on top of what has already happened to him... it is really hard and seems SO HORRIBLY UNFAIR. But it must be done. This is the ultimate "tough love".

My advice: Grit your teeth, get a good pair of earplugs and hang in there... it WILL get better. Once you get the muscles loosened up, it won't be so uncomfortable. Once Douglas learns that you aren't trying to hurt him and stops fighting it, it will get easier.

Kate

Dear Jennie, Hello! I am the mom of a 9 year old little boy with a left brachial plexus injury from birth. I rarely come to the message board any more but since I did and read your message I felt compelled to respond to you. As I read your post I began to tear up because I remember those days so well even though it was 9 years ago. I am so sorry you are having to go through this but I wanted to encourage you that #1 It does get better. And #2 You are at the right place to get information and support. The advice from the previous poster to take your child to see a SPECIALIST IN BRACHIAL PLEXUS INJURIES is vital. If your child needs primary surgery better to know that sooner rather than later. I didn't find others with children with this injury until our son was almost 2 years old. The friends I made back then are still friends today. Anyway...I just wanted to let you know it does get better. Hang in there and God bless you. Love, Joann

"That said, I do think Joshua experienced a lot of pain around 2-4 weeks old. I think the muscle damage that can occur during such a traumatic birth is highly under estimated! If the neck area is stretched enough to tear nerves, it certainly is going to strain and possibly tear muscles as well." Kate, just had to say I so second what you said! Same thing here. I am just so frustrated that the doctors often deny the involvement of pain and have so much to learn about this injury.

To the new mother. I think you have been given the most important advice. Get to a specialist or multiple if you can, to get various opinions and educate yourself. Start researching to find a good PT/OT who has had some experience with bpi kids or at least one who is self-motivated and willing to learn and do some research. Daily ROM's are very, very important. You should do them whenever you get the chance, with each diaper change, and while nursing (get one of those nursing lap pillows, it helps for stretching). Also, get one of those mini massagers to provide some sensory input.

I am sorry your little one is in pain. I remember how horrible those days were. I thought I was going to lose my mind. It will get better soon. Hang in there.

Helo Jennie, welcome to these forums. It is a truly wonderful source of support. I am an adult LOBPI,but a mother of a son born with multible medical problems and I practically lived at a childrens hospital for 10 years.(he's and adult now) anyway I used a rocking chair and went thru 3 of them. I never could tell where it hurt so I would just rock him as much as he needed...until age 10(he was small for his age). When I would get settled in his hospital room I would go find the rocking chair and move it to his room for the duration..Only if it wasn't claimed all ready, tho! I was lucky and got there 1st.....
Carolyn J

Hi Jennie:

I am sorry to hear about Douglas's injury.

My daugther, Mariella, is 2 1/2 and she has a left brachial plexus injury from birth also. She just had her first surgery in Boston this past Jan. She had secondary surgery to improve her function in her arm and increase her ROM. She has had amazing results thus far.

You should get to a specialist if you haven't done so already. Where do you live? You can look under the medical resources here on this site to find a specialist near you. You need to get him into PT if he isn't in it already. Do his ROMs several times a day or more. Don't pick him up under the armpit and be careful that his arm doesn't hand while you hold him.

What kind of fuction does he have now? Tell us a little more about his particular injury is you are willing.

If you want to hear about Ella or her story after birth email me anytime.
Ldybug4134@aol.com

~Krista~

typo...

be careful that his arm doesn't HANG while you hold him

sorry.

Jenny,

If you'd like to be added to UBPN's mailing list, just email me (nancy@ubpn.org) your regular (not email) mail address and I'll add you. UBPN produces a magazine called 'Outreach' twice a year. There is no cost. I can also send you some back issues if you would like.

Nancy Birk
UBPN President

oops sorry I misspelled your name!
My roommate in college was Jenny and so I automatically type that.

Nancy

Welcome to the boards. I'm Cindy mom to Melanie and Matthew. You can see some of the details of our life and what we have been through at www.franklinfamilybpi.com

(someday I'll actually get time to finish the site)

My best advice to you is to educate yourself about the injury and treatments available. And if you have any questions ask away.