Newby....My baby boy needs surgery.

[siobby]

Hi, I am new to this forum thing, so please be patient with me. My baby boy was a hefty little fellow at 10lb 9oz / 4.8kg, he was born with shoulder dystocia and as a result has brachial plexus palsy on his left side, his right humerus was also broken. For the first 3 months of life his left arm just hung by his side, during this time we took him to bowen therapy, accupuncture and to see our naturopath and of course did daily physiotherapy. After 3 months of very little recovery we took him to see a chiropractor and from the very first visit we have seen incredible results. He now uses his arm to reach for things and he can draw it up to his mouth, I see so much improvement everyday. He has no elbow flex or supination so far. He is now 4 and half months and the orthopod has decided to do surgery within the month, this has come at a great suprise to me since at his 3 month visit I was informed surgery looked highly unlikely. They have made this decision based on watching him for 10 minutes at a clinic, there have been no MRI's done or EMG's, is this normal practice? I have taken it upon myself to get an EMG done next week so I can arm myself with some results for my next Ortho visit in 2 weeks and am praying for some magic to happen in the mean time. Has anybody had any success with anything I haven't already tried?

To be honest surgery is terrifying me, but it is good to read about people's positive results, I'd be interested to know about long term results. I'm sure that i read a study early on in the piece about the results of having surgery or not, they found that those with no elbow flex at 3 months that chose not to have the surgery still made good progress when they were followed up long term. I'm trying desperately to find it so I can read it again, does anybody know the name of the study or read anything similar? Anyway it is getting late, I will keep you posted with EMG results etc.

[jmar]

hello siobby welcome to the boards. sorry i do not know a lot about the surgery you are writing about, but i do know how hard it is to face that type of injury. you are doing a wonderful job at taking care of your baby. if something does not feel right to you, get another opinion. but always remember--taking good care of YOURSELF is the BEST THING you can do for your little boy. (or anyone you are taking care of) hang in there. you and your little boy will do just fine.

[siobby]

Thank you, it is hard to know if you are doing the right thing or not. I think he is doing wonderfully, he has antigravity elbow movement and has no weakness in his hand at all. My doctors have decided that surgery is best to treat his lack of elbow flex and supination, they are talking about doing nerve grafts, but are very vague about it all. They said they will do exploratory surgery and go from there. They have given me 2 more weeks to show some magic, if not he will be scheduled for surgery two weeks after that. I'm sure that my doctor is right, he is a well respected hand surgeon in brisbane, but I found a study called neonatal brachial plexus palsy. Outcome of absent biceps function at three months of age. It is a longitudinal study and concluded that patients with a C5-C6 injury and absent biceps function at 3 months of age often have good long-term shoulder function without brachial plexus surgery. Unfortunately no mention of bicep function. I would like a second opinion, I see a neuro on wednesday and hope he might shed some more light on the matter for me. Athough neuro's and Ortho's seem to be renowned for disagreeing. It is easy to find people who specialise in this area in America and the UK, but I dont know where to go in australia for a second opinion.

I dont feel like I have really accepted the situation. Most people that meet him would never know there is a problem, he is such a happy little boy. He has already been through so much in his short life, it terrifies me putting him through more.

[Boomer2009]

I would say second opinion. If the surgery talk seems as though it's coming out of left field, definately seek a second opinion. An MRI and an EMG will better explain what is going on with the nerves. Surgery is so scary on babies. When my son went in for his MRI and EMG I was a mess in the waiting room. I cant imagine how i would be during a surgery.
Go with your gut feeling. My sons EMg showed that he shouldnt have been doing some of the things he was able to do, so you cant always go based off of that either.
Dr. Nath practices out of Houston, TX and is amazing. If you are able to get to Houston or Phoenix, thats where i would go if your little one needs surgery. Hope this helps!
Lauren

[siobby]

So the EMG results confirm that Jacob needs surgery, he has no bicep, very little if any tricep and deltoid. Which is suprising considering how much he can use his arm. The neuro has also recommended surgery. I have a third opinion next week but fear the news will be the same. I guess I can take some comfort in knowing they can work little miracles with today's medicine. I have read so many positive stories on here which is also very comforting. This forum has been an absolute blessing. I cant believe I had never heard of these injuries before and nor has anybody else I know, and I love the hard work that people are doing to bring about awareness.

My Next post will be regarding the surgery I guess, unless a miracle happen in the mean time, which, of course, I am always hopeful for!

[Carolyn J]

Jacob's Mother, [I blanked out on your name...lol [Age-related?],
I will be praying for a good out-come for Jacob's surgery.
Carolyn J
LOBPI/72+++

[anotherbpimom...]

Siobby,
You're child is so lucky to have you! You are doing everything possible for your child and in a careful and logical manner, despite how you may be feeling emotionally. Everything you do now for your child will pay off exponentially for them. And if it gives you any comfort, think about how far back you can remember your life... 2 years old? 3 years old? later? It's doubtful your child will remember. Of course, I remember them well. Progress was slow for us the first few years. I had to look back @ 6 months at a time to see progress, but now things are so much better. Keep up the great work and come here to vent! We will listen to you and support you. Oh, and if your child has a favorite stuffed animal or blanket, bring it to the hospital for after the surgery.

Beth

[jmar]

siobby, one thing you could do is to get a journal and write down every day what you little guy can or cannot do that particular day. some days he may have a setback. that is o.k. too. then when you get discouraged, you can turn the pages back to a time when things were not as good. even when there is a setback the setback is way better than things were a few weeks back. good luck to you and your little guy.

[siobby]

Today is D Day, I hope my boy brings some magic!!

[jmar]

i hope your little guy does well. but i know he will be fine and you will be, too. dont forget to take care of yourself. that is a major part of taking care of him. sending magic to your family. good luck