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

[Tanya in NY]

Hi everyone. As a parent of a LOBPI child and nurse who works in labor and delivery, I've tried to educate the layman and my colleagues about BPI. I'm currently working on an in-service at the hospital I work at concerning BPI. I wanted to know from a parent's perspective...What did you wish your nurse would have done or said (or not have done or not have said)? This way I can include this information in my in-service. I appreciate it.

Tanya in NY

[Denise_Nach]

Tanya, Just educating them is a wonderful start! Several things running through my head as I read your post: My baby cried and cried...especially if moved. The nurses thought he was being fussy. Looking back now, I am certain he was in dire pain. I wish I had known. Also, he would suck for a few minutes and stop. I think his nerves were so injured his sucking was affected. I wish I had known. And then of course all the obvious things such as finding a specialist etc. Thanks alot!

[Savannahsmom]

Wow! My daughters suck was also affected. I was told it was due to them having to recesitate her and put her on oxygen. I think this should definately be known. Also, my nurse at the hospital went along with the OB's prognoses of it will get better in a few months. Someone needs to tell parents the truth when this happens. If I had not had our pediatrition come and check Savannah out, I would never have gotten her help as soon as I did. I just feel education is key. I applaude you in your efforts. Keep fighting the good fight for our kids! Heather in TN

[admin]

My baby would try a couple of sucks and then start crying and screaming and fall asleep in frustration - my doctor told me when a baby is that upset and they can't cope they will just cash out and go to sleep . I think the problems were maybe also due to diaphragm injury and possibly mouth problem.

[admin]

We had a baby who was constantly choking over here. I am convinced the muscles involved in swallowing were impacted. Also, a therapist later assessed some difference in tongue motion on the injured side.

[BarbH]

One nurse in particluar didn't know how to handle her arm. She didn't pin it correctly and it ended up hanging there until my husband would fix it after she left the room. Also, my daughter had problems nursing but they would give her bottles when she was in the nursery and they blamed her not wanted to suck on the fact that the milk comes out faster in the bottle and all I had was colustrum and that that wasn't enough to sustain a 10 pound baby anyway.

[Kath]

I just have to chime in on this one. I am the # 8 in my family and they told my mother she could not nurse me because "she" had such a rough delivery... they never mentioned I could not nurse because of T1 injury and until I found UBPN I was not aware that the reason I had so many eating problems as a child was due to this injury...

I am the mother of a nurse and cannot understand how they looked my mother in the eye for two weeks and never once let her know something was wrong... I guess they were not allowed to speak... in those days I cannot picture my daughter not doing what was best for the paitent.
Kath

[Karen Hillyer]

Just a quick observation on Barb's comments -
pinning a baby's arm to it's sleepsuit ( or any other garment) was the stated treatment in a 1922 publication ( sorry the name escapes me at the moment)
Foar any newbie parents our there please DO NOT pin your baby's arm to ANYTHING at all.
This has been contra-indicated by most BPI specialists for some time.
If your baby's arm needs support, roll up a pillowcase or hand towel into a sausage shaped roll and place it UNDER your babys arm - or place a small cushion under the arm to gently support it.

[Tanya in NY]

This is in regards to the breastfeeding issues:

WOW! Talk about not advocating for breastfeeding! The colostrum wouldn't be enough to sustain a 10 lb. baby? Bull!!! As most of you probably already know, the more a baby nurses, the more stimulation for milk production there is, therefore the quicker the mother's milk comes in!

As a nurse who advocates breastfeeding, and a mom of a BPI child, I'm appalled at some of the comments I'm hearing happened to you all. Keep the comments coming so I can present these to my co-workers, pediatricians, midwives, and OB's who work in a collaborative practice at my hospital. I appreciate all the input. Feel free to personally e-mail me if you have other comments you'd like to forward as well.

Tanya in NY
(Amber's mommy)