BPI paralyzed the lungs of our granddaughter-Anyone else experience this?

[SSAND11290]

Our granddaughter was delivered naturally, at ten pounds. (undiagnosed Gestational diabetes) The resulting shoulder distocia and BPI caused her to be paralyzed in both her left arm and both lungs. She was on full air support for 4 months, when one lung recovered enough for surgical intervention and stapleing of her stomach wall to both lungs. One lung now functions, and supports the other. Nerve grafting was done at TCH at three months of age, to try and repair the damage done to her at her birth.
Has anyone else ever experienced this? I wonder how
many children have been injured this way, and did not have such an outcome? There must have been babies that did not survive, and families not informed of why.
I have learned of many parents not being informed of their babies BPI injuries. Many doctors do not admit to the presence of the injury. Sadly, most people, hit with this trauma do not know what actions are necessary, or the speed needed to make improvement possible. We are very lucky, she is now 9 months old,
and improving daily, but it has been an emotional devastation for us all. Her tracheotomy(removed) and gastrotube feedings cause reflux and she still does very little oral feeding. She cannot relate to oral feedings satisfying her hunger.
Has anyone else been here?
Sandy

[francine]

Sandy - my daughter's injuries were no where as so severe and I know how her injuries devastated us so I can't even imagine how you and your family feel. My heart goes out to you and your family. Where do your kids live? Maybe they live in an area where there is a bpi support group? Also - there are gatherings happening over these months - maybe there is one in their region? http://www.injurednewborn.com/gatherings.html.

Have you seen http://www.injurednewborn.com ? Do you think your kids might be interested in sending me a picture for this site? We'd be honored to have your granddaughter's picture there.

God bless you, your family and this little sweetypie,
francine

[Lindsey]

Wow...I never knew BPI could get so severe...
I really wish I could say something that could help you, but I don't. It makes me remember how much worse it all could have been. I will keep you all in my prayers, and I hope everything turns out alright.

Lindsey

[Kathleen]

I really am at a loss for words.

I am right obpi and 62 and never realized how bad some injuries can be.

I will keep you and your family in my prayers.

I would also like to say I am glad you found the message boards. The boards here will give you a great resource for information and support.

My prayers are with you and your family...

Kath

[TNT1999]

Hello, Sandy. Welcome to the board. I'm sorry to hear of all the injuries that your sweet granddaughter suffered during her birth. Sadly, there are a lot of parents / grandparents who post on the general message board of UBPN b/c their children have BPIs. I have heard of some phrenic nerve damage too, but nothing to the extent that you posted. If you'd like, checkout the general board of this forum. The general board is mainly geared toward parents / grandparents of children who have BPIs whereas this board is mainly adults who live with the injury. Both message boards (as well as the other boards here) can be helpful. I very seldom read/post on this board (used to be here a lot and I learned a lot, just haven't had the time) and am usually on the general board. Congratulations on being a grandmother! I hope you get all your ?s answered here and I hope that your daughter/son (?) also check out this site. -Tina (Mom to Nicole, 3 yrs old with a Left BPI).

[Tessie258]

Hello,
I'm so sorry your granddaughter was injured!!! This is sooo aweful!
I did read about a little boy in the past who had the breathing problems but not to the same extent. I will be saying prayers for her.
T.

[KarenHillyer]

Hello Sandy
I am the National Co-ordinator for the Erb's Palsy Group in the UK
I would like to offer my experience within the group over here, to give you an idea of numbers of such severe injuries as your grandaughters.
We have almost 1000 members in our group and of those two children had very severe breathing difficulties such as your granddaughter and two boys also had some difficulties, although not quite as severe as the oxygen dependancy.
I notice that you say your grandaughter has feeding difficulties due to the gastro tube, I think you might find that she is experiencing these as another side effect of her injury rather than the tube. I say this as my own son had severe reflux problems as did 3 of the children I mentioned above, and this was attributed to the phrenic nerve ( which also controls the diaphragm)suffering some damage as well as the nerves controlling the arm and hand. Certainly within our group many children do suffer quite severe feeding problems and an additive to their feed is often the only solution to help them keep liquid feeds down enough to help with weight gain.
Just thought I'd let you know the position over here.
Good luck with your grand-daughter
Karen

[Brenda]

Hi Sandy! I'm sorry that this has happened to your whole family. Our experience does not sound as severe as yours, however my daughter now 6 months old, also had breathing problems. They told me she didn't make it, (they lied), she did take over 15 minutes to recessitate (sp?) and they told me she was paralyzed from her neck down. To jump ahead, she was medivacted to the local Children's Hospital and had to breathe by machine for a long time, she just couldn't get the hang of it. Because of this, she too had to eat via tube. While she was in the hospital the tube went directly through her belly button. When I finally took her home I had to insert a tube up her nose, check for placement, etc. to feed her. Things I never knew, I became an expert on overnight. It took my daughter months to learn how to feed from a bottle, she wouldn't even try to breastfeed. She did have a swallowing test done to make sure she could swallow, I would recommend your granddaughter having this done. At six months old, my daughter is now eating soley from a bottle and has recently started on infant formula. It was not an easy road. At one point, I just took the tube out and when she was hungry enough she ate from the bottle, of course I put it back in and fed her at night by the tube until she got it. Don't worry, I never starved my baby. LOL My also had breathing problems due to damage while they were putting a breathing tube in. It caused her Larynx to be over floppy (Laryngomalacia) in English her windpipe would collapse when she inhaled, she sounded like a squeaky toy. As a first time mother, this made sleeping easier, I only worried when I couldn't hear her squeak. Doctors confirmed that this effected her eating and CAUSED her reflex and was the reason she couldn't drink from a bottle without falling asleep after two sucks. Her breathing was exhausting her. She had lazer surgery at the local Children's, an overnighter, and within weeks she made no more sounds, was eating better, and her overall spirit was a million times better. I feel like I am going on and on and on. So, if you want to know more let me know, I would be happy to talk with you.

[Kathleen]

Ssand
I just can't imagine what a parent goes through with this injury.

I can only see it as the person who was injured.

It still amazes me when I see new people posting. How could this happen.

I am 62 right obpi and until almost 3 years ago thought I was the only one with this "rare" birth injury...

I am now in the process of forming a local support group in my Area... I am the only adult OBPI and we have 1 tbpi and the rest are little ones.

As Tina said this is the Adult/board... but we really do learn from each other so if you have any questions for the older population please ask away.

I post on all three board when I have time but always check this board.
Kath