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

[admin]

WOW! Unbelievable story. Thanks for sharing. I wish nurses like that would start speaking out and sharing the truth about this injury.

[admin]

My LOBPI son was 11 lb, 14 oz. and loved to nurse! I think it was very comforting for him, and I had plenty of milk for him! So we had no issues there.

I have to confess to a bit of cynicism about what the nurse should or shouldn't have said, because as another person already said, they're scared to death to say a word because of liability. I know they're not going to go into a detailed explanation of BPI when this happens. They just want you to leave. Again, I have been very burned, and I am very, very cynical.

No nurse talked with me at all about Danny's injury. Maybe they didn't know enough about it to comment; I don't know. But they should have. Why don't nurses know more about BPI than they do? Why don't doctors, for that matter? So nurse education would help!!! Good grief - this injury occurs in 2 to 5/1000 babies. You'd think they'd have some sort of rudimentary knowledge they could share with a devastated mother of an injured newborn.

Most of all, because we are in Texas, I really wish the nurse would have referred us right away to Texas Children's Hospital, or at least informed us that it existed and dealt with BPI. That would have saved us a lot of wasted time and energy with doctors who didn't know what they were doing.

[Kath]

Janet

I don't think there is enough medical information in text books. My daughter is a nurse and Cardiac is her specialty... she went to a fine college with a 4 year clinical as wells as classroom (her choice for better education) she was an A student all the way... And when she was in school we checked through her material to find out more about My ( I am robpi) so called rare injury... we found a small note in the Merk manual... she was not taught about bpi because it is not in the text books... there are no on going studies on long term issues and no one is counting so we can pretend it is still "rare". She was taught her first responsibility was to the patients.

This lack of health education on the part of the schools does not excuse any health professional from noting to a parent something is wrong... just a word of caution to be careful with his/her arm would do... showing the parent how to move the arm without saying anything if they fear job loss.
When we are injured it is so obvious and it should not be hidden.

[Tanya in NY]

Kath,
I agree that the reasons MOST nurses don't say anything or much at all is because their knowledge level isn't good. I am an OB nurse who didn't know much about this at all until my own daughter was born with ROBPI! Amazing, huh? I only knew that "these injuries go away soon" as the neonatologist originally told another patient. What a bunch of hogwash! Now I know better and am fighting for the cause by educating my colleagues (nurses, OB's, CNM's, pediatricians). That is why I posted this question on the website so I can hear what you "wish would have been told to you" or what good things did get told to you. I'm relaying all of this information to my colleagues.

Tanya in NY

[Kath]

Tanya
I knew that was the reason you asked the question... I also know what my daughter and cousins and friends who are nurses were not taught. I belong to a womens club and each year in Oct for the last three year I speak about obpi and the causes... I have been a member for over 17 years and in our club we have - 4 nurses and 1 nurse practionar(sp) they did not know what was wrong with my arm. They never realized how much of my body was impacted by this injury and did not know that the injury could be prevented. They also did not know that it was not reported to the CDC or anywhere and that is why no one is working on lowering the statistics... as you can see I always have a nurse around me... I love nurses - Nursing is a vocation we all know the pay is not great... LOL..
Thanks
Kath

[admin]

Way to go, Tanya!!! Help get the information out there! My story is: When my baby was born he screamed for 3-4 hours straight. He was inconsolable. Looking back, I just feel sure he was in pain. And it is so reassuring to hear about other moms of kids with bpi injuries having trouble nursing - yeah, now it makes sense!!! It is a wholistic injury, but we are not even made aware that anything is even wrong!!! Nathan had real trouble breastfeeding, and the hospital didn't support us and we really really had to struggle to get going. It makes sense that not only was he in pain, but that his sucking could have definitely been affected. I would just want somebody to tell me SOMETHING resembling the truth. We were not told ANYTHING except "oh, we're bringing him down to x-ray" and "he's got a compressed nerve which will be better in 3 days." I wondered why after 2 days I didn't see any signs of improvement. I thought, "isn't something supposed to be happening?" They want to keep parents in the dark so that the parents have no knowledge, no power, and don't get mad. We really, really need nurses to advocate for us and tell us what the injury is, what the name of the injury is, and ALL the possible options - from resolving in a few days (some very minor stretches do) to needing surgery because of poor natural recovery. AND DEFINITELY don't tell us to "wait a month" DEFINITELY BE PREPARED at the hospital with specialist names, numbers, how to contact people who know and can help. Give parents names and web addresses of support groups, specialists, etc... Help make the situation better by getting giving parents information to get that baby to treatment teams right away that can evaluate and even get started with gentle romming. Parents need help, and if nurses could help be a conduit to information that would be great.

[admin]

Kath,

You make such great points. You are absolutely right about the medical textbooks. That's why I am so grateful to all of you at UBPN for your efforts in making people aware of BPI! Someday, this won't be a rarely-heard-of injury anymore. And thanks, Tanya, for undertaking this task. It is so needed!

As a side note ... I still can't get over that there's no mention of BPI in "What to Expect When You're Expecting." So much for the "pregnancy Bible" moniker!

Janet

[admin]

They can't put everything in the 'What to expect...' type books. BPI is relatively rare compared to, say, neonatal death(7 in 1000 births)and they don't mention that much either. And the worst of it is, both the bpi AND a large proption of the deaths are PREVENTABLE. Maybe thats why they aren't mentioned, they just shouldn't be happening!
I remember reading here a while back that someone had put together teaching seminars for OB staff on SD and BPI, and that these were very welcome by these staff. Was it in England this was happening?

[admin]

Trust me, labor nurses know what a BPI is...but they probably don't know a THING about it's treatment or prognosis. I don't think they have any advice to give. One person mentioned they just want you to go away. And that might be right. They know a lawsuit when they see it. TRUST ME. If they were the nurse in the room, it's a high probability that they'll be called up during a lawsuit. Frankly, I wouldn't fess up to much either. I can't blame them. BUT, there needs to be SOMEONE in the hospital who can be called as a resource when a child is injured, even if it's just Spiritual Care. Someone to give a little support and to direct parents in the right direction. But perhaps this isn't possible either. I think mainly this information we as parents need, needs to come from our child's pediatrician. Don't laugh! I was a victim of that too, but I think that's who needs to be educated the MOST.
signed: a nurse mom of a bpi child