New here and feeling overwhelmed

[gremlinsmummy]

Hi all,
My 5-month old daughter has just been diagnosed with Erb's Palsy. Although we've known since about 3 months that there was something wrong with her arm, it's a real shock as her birth was straightforward, there was no traumatic injury and she had three paeds checks in her first week which didn't pick it up. I first noticed that her hand turned strangely at about 3 months, but we didn't get seen by a pediatrician til last week and the paed says if it was going to resolve on it's own, it would have already.
So now we're starting intensive physio, and in a couple of weeks she has an MRI scheduled under sedation. I'm torn between thinking 'this isn't that serious' as she does have partial movement of some muscles, and thinking 'my precious baby won't be able to brush her own hair or open cans or tie her shoelaces' and that's quite overwhelming as we also have an older child with special needs.
I'd love to hear from others in similar situations. What else can we do to help support her development? And how is this likely to affect her development?
Thanks in advance!
Emma

[jmar]

hi. welcome to the club we all wish did not have to exist. you are not alone. brachial plexus injuries are not always a resut of a birth njury. sounds like something else happened to her, causing the injury. you would have noticed it at birth. not saying anyone intentionally hurt her. sleeping with her head to one side while sitting up could have pulled on the nerve, or her arm was moved the wrong way, there are dozens of ways she could have been injured. who knows. the important thing is she needs to be treated for this. make sure you take her to a BPI SPECIALIST...not a regular neurologist or neurosurgeon or even a regular pediatrician. a BPI SPECIALIST. if a dr does not specialize in BPI, they usually dont have the proper training to deal with bpi issues and will want to send you on a wait and see game which is a VERY WRONG ANSWER. i had never heard of this injury till i was injured over 2 years ago. i have learned a lot from everyone on this board. from parents to older adults who have lived with this for 70+ years to teenagers to people who were injured at almost every age there is and a lot of different causes. i have never had any kids, but i do know the wait and see game is dangerous at any age. it almost caused me a total permanent loss of my hand and arm. having 2 special needs children is no walk in the park. i have had special needs people in my family (uncle, cousin, 3 nephews, and a niece). 2 of them were born before i was. i know it is rough. but i could not imagine having 2 in the same family. i hope the best for you and your children. and one thing to always remember: taking care of yourself is the most important thing you can do to take care of your kids. hope that helps a bit. good luck

[katep]

Emma, I bumped up the thread "new to bpi... I think" for you. I strongly doubt the diagnosis of bpi that you were given, and my reply to that thread explains why. I have known of many such "late" diagnoses of bpi and not one of them was correct; it is not that uncommon for general pediatricians to get this wrong. The MRI should help get to a correct diagnosis as should a referral to other specialists. I wish you the best in your search for answers and I hope you'll let us know what you find out. Kate

[gremlinsmummy]

Thanks for your replies

Kate, your thoughts actually only add to my uneasiness about the diagnosis. There's absolutely nothing in the birth that might have caused a BPI, second stage was less than 2 minutes and she birthed herself onto the bed too fast for the midwife to catch her so definitely not stuck. Plus she had three different paeds check her, surely they wouldn't all miss it? And there are other things that niggle at me...

For example, in utero she had her left hand in her mouth on every single ultrasound, and as I had polyhydramnios, I had a lot of ultrasounds. Did having her hand in her mouth cause the nerves to develop incorrectly to start with? Or did the nerves developing incorrectly cause her to favour having that hand in her mouth? I discussed this with the pediatrician and she said it's unlikely but not impossible.

Secondly, at 9 weeks she got a UTI and had to have IV antibiotics. The cannulation took three doctors well over an hour, and she fought them every second of the process. Could they have caused the damage while holding her down? It was about two weeks after this that. I first noticed the problem with her hand turning. I've looked back at photos of her prior to this to see if her arm was already like that and I just missed it, but as she was a winter baby, she was in long sleeves and mittens the first few months so it's impossible to see. Again, I discussed this with the pediatrician and she thinks it's a possibility but was reluctant to express an opinion either way as the ER doctors that performed the cannulation are her residents.

At any rate, it certainly presents NOW like a BPI in terms of the muscles involved, weakness of grip and restricted range of movement. BUT it hasn't improved at all since we first noticed it which is atypical of a BPI, and I sometimes notice that the affected arm is mottled and purple and I've not read anything which links that particular symptom with a BPI. The pediatrician was confident it's not cerebral palsy as she has good muscle tone in all other limbs and is otherwise developing normally. It had crossed my mind initially as my brother has CP (right side hemiplegia) from a birth injury and the clawlike way baby holds her hand reminds me of his hand.

We're in good hands tho, next week she sees a pediatric neurologist at the local Children's teaching hospital, and then they want to have her reviewed by Professor Michael Tonkin, who Google tells me specializes in hand and arm surgery and has written papers on neonatal BPI. Her pediatrician said they will schedule the MRI to happen before Xmas.

Thanks again for your replies

[jmar]

you might want to do some research on thoracic outlet syndrome in infants. the thoracic outlet is the space between the ribcage and collarbone. this is where all the blood vessels and nerves come from the spine and heart to the arm. if this space is too small, it can cause some problems. try this: while in an upright (sitting) position, raise her arm above her head. watch the color of the arm as soon as it is raised. within just 1 or 2 seconds, if it loses it color, it might be thoracic outlet syndrome.