Parents--What did you want to hear from your nurse?

[admin]

I would have liked to be given information about the injury, and accurate for that matter. We were told our child would be fine in 24-48 hours. I would have liked to be given accurate stats, like 25% don't get all better. I would have LOVED to be told how the injury happened (now I am dreaming), instead of being told MY plevis wasn't big enough for my baby. I needed to hear the truth, but that change will never happen due to liability. I would have liked to be given contact information and to know that we should see a true bpi specialist and begin rom in the near future. My child's arm was pinned to his shirt and that is how we left the hospital. I would also appreciate if they would have documented what happened in the charts. At our hospital they basically don't have to document anything at all. But more than anything Tanya.....I wish I didn't need to hear a word from them about bpi's, because if they would have been thoroughly trained in a protocol for handling shoulder dystocia than my child may not have been injured. Our nurses did NOTHING at all, however, at depositions they sure acted like they did.

Thank you very much for your efforts.

Your friend out west

[BarbH]

Pinning her arm was supported by her PT. I had no idea about not pinning until just now. The PT told us a certain way to pin (that's what I meant in my earlier post) while she sleeps, and to put a roll under that side so she doesn't roll on it. When she turned 4 to 5 weeks old she started moving a little and I stopped pinning all together because I wanted what ever would move, to move.
I'm sorry if I confused anyone or anything...that wasn't my intention.
Barb

[Karen Hillyer]

Barb
don't worry - I'm sure you didn't confuse anyone, I just re-read my post and it sounds quite blunt - which I didn't mean it to - thats the only trouble with the written word - it doesn't convey subtlety at all.
If nothing else these posts PROVE that there is a BIG need for education out there - so well done Tanya for tackling the whole topic!
Karen

[PeggyUBPN]

I would have appreciated someone--either doctor or nurse, telling me what exactly a BPI was and the truth that it doesn't always resolve itself...especially after a delivery like the one we experienced with my daughter.
Our nurses were very nice, but they didn't hold Emma's arm in the correct position (wasn't even pinned for the first 4 days while she was in the neonatal ICU. They would flip her and let her arm flail every which way. I wasn't allowed to hold or nurse her for 2 days. They didn't even tell me this was a "brachial plexus injury" or a neurological injury. The explanation of the nerves, along with the actual diagnosis, would have been beneficial. It was a hit or miss learning streak via doctors, therapists and Internet. This was over 8 years ago, however, I don't think a lot has changed in the hospital I delivered in.

Peggy

[Tanya in NY]

Thank you all for the great feedback thus far, and the compliments on trying to tackle this topic. I feel like I'm in a truly unique position to educate others on behalf of my child, other children, and future children. I feel like it's my duty as a mother and nurse. Keep the comments coming, and feel free once again to contact me anytime. And to my friend out west...my compliments to you as well for trying to educate others.

Tanya in NY

[admin]

I would have liked to have been given a list of resources like ubpn and brachial plexus specialty offices and advice to continue to follow up over the life time of the child - and to be sure to follow up sith physio - we were denied access to physio for the first two years of my son's life as you needed a referral in canada at that time and no one would refer me. An info sheet on all the types of treatments that i should be looking into like tes, ark braces, good surgeons, other estim and whatever else is proving helpful to those who have gone before. I was so isolated and lost and totally ignorant of where to even begin as were all the health care proffesionals that were "taking care of us"

[m&mmom]

Tanya,
With Melanie it would have been great if they would have said what the injury was. I told all of them, but it would have been nice to have it confirmed.

With Matthew, the nurses were great. They kept asking me if I had gestational diabetes to plant the seed. They told me the classic signs Matthew had indicating that I may have not been diagnosed. They were awesome.

Cindy

[Paula]

POOR SUCKING!!!!!
No wonder my milk dried out!! I cried for soooo long because I could not BF my son. I even tried pumping and meds but that did not help to start back up after 6 months of being "dried out".

[admin]

I would have liked them to be better educated period. The pat reply that most kids get better on their own was not enough information for us. We needed to know how to help our son and had to turn to the web for answers and information because we couldn't get it in our community.

[admin]

You mean involving a BP injury? MY nurse told me right after the delivery straight out- NEXT TIME YOU DELIVERY ANOTHER BABY, I SUGGEST YOU GET ANOTHER DOCTOR. ''I DO NOT CARE WHAT I SAY BECAUSE I AM HAVING A BABY TOO AND I WILL NOT BE BACK'' she was delivering a child a few weeks after me. She was pissed. If that is what you mean. Some nurse have to sway from the truth because of their jobs, you know?