Talking to parents of newborn with OBPI

[LJSL0330]

A lady that my husband works with has a great grandson who is 7 weeks old that has an OBPI. He told me about him this week and I literally cried for this family that I don't even know. It it heartbreaking that this still happens!

I have povided her with websites for the boy's mother, who is only 20, to check out for information, but I have also asked that she and other family who will be part of her support network meet with me. I don't want to overwhelm them or scare them. I just want to reassure them that they aren't alone and I want especially to urge them to be pro-active with the boy's treatments. (I am hoping to be able to pay for the mom and son to come to Camp next year.)

I'm a little at a loss though as to sharing my personal experiences because they don't seem as typical as what I've read of others'. My own OPBI injury did not effect me like so many of the folks on her have shared. I don't remember much pain as a child; I only had one surgery; and I have what I have come to understand is a very mild case. (If there is such a thing!)

My question to the parents of OBPI children out there on the boards is this:
1.) What would you tell them if you could sit down with them?

Thanks to all for your help!
Lisa
LOBPI
40 y/o

[joseph]

I often thought about going to the local hospital and asking if there was any way I could be freelance and talk with new parents whose children have been injured. I thought about what I would say to not overwhelm them but to also get the point across that the injury could potentially be life changing.
Keep in mind that the mother, depending on how bad the injury is, will be going through the grieving process. The first of which is the denial stage. I went through this stage and it lasted almost a year. I didn't seek help for my son until he was almost two months old. I still thought it would get better on it's own. That's what the NICU pediatrician told me. He's a doctor, why would he lie??
I would start out with just trying to be a friend to the mother. Tell her that not all injuries get better on their own and that she should have the baby seen by an expert, just in case. That way you're not telling her that it won't get better or that it will.
As it sinks in she will need more moral support and the fact that you've been through it you can tell her how it's effected your life. If you can, have your mother tell her how it was for her. It's an entirely different perspective.
Be patient with her. If you tell her that it's extremely important for follow up with dr.s for her baby and she has a "yeah, yeah. I'll get around to it" attitude don't be mad. It's all part of the process. It's been 3 years now since my son was born and it took me at least 2 years to accept this. I also had Post Tramatic Stress from all this. I had to see a councelor for a while. It's a long process.
Good luck and please be patient and start out "soft" with the information.

[lawrey]

I think one of the most important things would be to help them see the importance of finding a BPI specialist. Not a neurologist or an ortho, but a neuro or ortho that specializes in BPI ... trust me it'll save them a lot of time and heartache. We saw a ped ortho we were referred to by our family doctor who seemed like he knew what he was talking about. Knew about BPI injuries and what to look for, etc. Then on the third visit he told us we needed to see a specialist ... I was like ... what??? aren't you one??? So, that would be my main advice ... a specialist will be able to pinpoint his problems and help him more efficiently.

You've already helped a lot by giving her a form of support. This site and others like it help me get through my rough times!!!

[Tanya in NY]

I'm glad to hear you are reaching out to this family!

Here's some of the things I say to new parents. Keep in mind, only about half of what you say will be remembered, so I provide information from UBPN's pages as well in a folder to families.

-I'm sorry this has happened.

-Nobody knows for sure how your child will fair. Some children get full recovery, some experience no improvement, and then the majority fall somewhere in between. If anyone tells you that your child will completely recover early on after the treatment, then they are speaking from the heart rather than reality since nobody can predict what will happen. Time will only tell.

-Range of motion exercises. I have the PT come in and demonstrate them since I'm not certified to do this. Pictures are included of the exercises.

-Grief. I touch on this topic because families can react as though there is a loss of a child at times because essentially their "normal, healthy" child does not exist, but rather their beautiful child with an injury exists and some people have a very strong reaction to this. Grief is very normal and can catch some people off-guard if you don't let them know about it.

-Anger. Another normal feeling. Express this anger in a healthy manner...talk about it to others. Support is important.

-Education. Getting educated is the best thing you can do for your child!

-Tips for getting through the day: i.e. laying the infant's arm across the belly when picking him/her up; rolling up a receiving blanket to support the arm while in the carseat or swing; touch the baby's arm for stimulation; how to dress/undress an infant for comfort, etc.

-I provide a list of terminology as well

-I provide my phone number and email address, along with UBPN's website as well.

That's the basics, and many times there's more depending on how tired the family is and how interested they are in conversing about the topic at that particular moment. I always ask if it is okay for me to follow-up via phone at a later date with them as well and do follow-up about 1-2 weeks later and then after that too.

Good luck.

Tanya in NY
Amber's Mom, ROBPI, almost 7 years old

[LJSL0330]

Thanks everyone for your help. I haven't heard from anyone in the family yet. I didn't expect to right away. With the little boy being so young still I figure they are going through all kinds of other adjustments that likely seem more pressing to them.

My plan was to be available to answer questions and provide them with support and resources. These are things that were not available to my mother when I was injured. My mom is 80 and in a nursing home in another town, so her talking to them isn't possible. But after I started researching my own condition, I talked to her and learned just how much support she didn't have when I was born. I told her I found a doctor (Nath) who sometimes operated on adults and had met with him, but he didn't think he could improve anything for me. She cried and said "at least you found out." I was a little surprised because she has always been an acceptor. You accept what happens and you don't fight it, you just deal with it. It took a lot for me to not just say "Oh well, they can't do anything for me now." That she realized that I, as an adult, had to do that even if it meant being disappointed by the results, touched me.

ANYWAY -
I just want to be there for this mom and maybe even the little boy as he grows up. Part of that comes from having met a little girl with a ROPI - she was about 5 - who's grandmother worked with me. When I was a kid, I always felt like no one else in the world was like me, so I made it a point to show her that my arm - just like her arm - didn't work like everybody else's! (I also wanted to show her that no matter what happened to her arm, she'd be fine when she grew up. I ALWAYS worried about that as a child.) She was wide-eyed at my demonstration. The next time she came in to see Gramma at work, she looked at me and said "I remember you! Your arm is broke too!"

Anyway, I hope to hear from this family soon, but I know that it may take time for them to accept that they need the support of other people who understand. If there is one thing that UBPN has taught me it is that WE ARE NOT ALONE and I am always anxious to pass that particular fact on to everyone I meet!

[elmahnos8]

If I were the mother of that newborn baby, I would also worry because the newborn baby has an OBPI. Of course all mother wanted that our newborn baby should be healthy and should not have any illnesses. I just wondered what the effect of OBPI to a newborn baby was.