New here and have some ?

[MommyOfTwo]

Hi, our daughter, 5 weeks now was born with bpi due to a very hard vacuum assist delivery.

I'm not sure where to start, she has movement in her hands--she can grab and open and close her hand. She has feelings throughout the whole arm--at least that's what I think since we haven't seen too many doctors. But I think that's about it. So far we've seen an OT once when she was 2.5 weeks old. Right now we're waiting for insurance and referals to go through.

I'm not quite sure what the next step is or what to do. It all seems so overwhelming. I'm trying to be strong but it gets hard sometimes--whenever I think about her poor little arm I just feel so guilty, as if I could've shouldve done something more to prevent it. Maybe I should've have insisted on a c-section, I just don't know. And when I think about the difficulties this will cause in her life it just makes me so sad and angry at the same time. No one else seems to undestand.

I'm just starting to search the internet for information. I'm not sure what to do next. I hate to just wait when it seems like time is of the essence. The OT we saw the one time recommended we do ROM 3 times a day--does that seem like enough times a day?? Should I be requesting to see certain doctors etc?

I don't know how to quite explain her injuries to people a lot of the time and when I do explain it to them I feel very defensive about it.

I love her no matter what but do some of you--the new parents ever feel like "my baby's so perfect" but in the back of your mind think except for her little arm. I feel so much guilt because that has popped into my mind.

I'm also starting to feel a bit of anger--at the OB. It seems like the OB should've been more careful or recommended a c-section.

I don't know--it's all so new and scary. Anyhow, if you've read my ramblings this far I apologize for some of the incoherentness of it all. Any suggestions about what to do or where to go find info would be great.

[Lexijason2004]

Dear Lisa,

I also found this site when my son (lobpi - means left obstetrical brachial plexus injury) was 5 weeks old . He's now 13 months. This may sound crazy, but you do sort of get "used" to dealing with this injury (I say that to let you know that dealing with it will get better, not to sound callous to your feelings). It always makes you sad, of course, but you will learn to cope. These kids do have difficulties, but your precious baby will still grow to be a happy, playful, wonderful child. You'll hear all sorts of fabulous stories here about the great achievements of these kids (despite the injury and just the regular kid stuff too!).

I wish I had more time to write right now, but just know that you will find so much support here. I'm sure some of the more experienced parents will give you great info about the medical resources and also ways to get therapy started before insurance, etc. There are many state agencies that offer services for no charge...let everyone know what state you are in, and we will help provide more info.

Everyone here understands how you feel. Don't be afraid to share your feelings/fears/questions. I did/do feel exactly as you do about my perfect boy ("except for his arm"). There are many, many confusing feelings with this injury, and that's ok.

Anyway, I'm not sure my rambling has helped. It's 5:30am, but I wanted to give you some immediate support.

Lexi

[admin]

Lisa,

All of your feelings are normal. I did have the same thought as you about how my baby is perfect, but except for her little arm. It is heart breaking, isn't it? No matter what, she is perfect and even her arm!

Right now you should be doing therapy like you mentioned. PT is important at this stage. PT should be done at least 1X weekly.
You need to find a BPI specialist if you haven't already. You can find one at the medical resources listing here on this site...
http://ubpn.org/medicalresources/

You are welcome to visit my Web site and review the information for new parents and other BPI information. We also have a new support group. We have people from different states so feel free to join us.
http://www.ctepbpicircle.com

I wish you lots of luck with this journey!

~Krista~

[dmom]

I am so very, very sorry to hear your baby was injured.

Please don't apologize for what you feel! You rattled off every single thought that ALL of us have had at one time or another - was it my fault? (of course not!) - I'm mad at my OB (you should be!) - etc. - my child's perfect but for his arm (and yet we know NO child is perfect!). You're trying to deal with a very hard circumstance: someone injured your child. Of course you're mad and heartbroken! That's okay!

Practically speaking, I would highly recommend a few things to you. Yes, you should be doing range of motion exercises. You should also try to find the early childhood intervention services program in your area. Check with your local school district. Ours offers free therapy to children under 3 who qualify, and our son did.

You should also get your baby to a BPI specialist for a thorough assessment from someone who knows this injury. There are several throughout the country. We go to Dr. Rahul Nath (www.drnathbrachialplexus.com) and love him. Don't know where you are, but he does evaluations via video if you live far away - many, many of his patients are from out of state.

Also, you might want to check out www.injurednewborn.com. You will find it very helpful, I think.

Good luck to you. Nothing you've said is unusual or weird at ALL. You are absolutely normal. Feel free to e-mail me if you want to chat some more!

Janet
dmombpi@msn.com

[Chloesmom]

Hi. I also am very new to this. My Chloe is 5 months old and is injured in her right arm. I can remember feeling exactly how you are describing just a few months ago. In fact reading your post made my stomach start churning just like it did at the beginning of all of this. First...it is not your fault. You were giving birth- i'm assuming with no medical degree so you hired someone to make sure everything was done right. IT IS NOT YOUR FAULT. I blamed myself for weeks...months...sometimes I still do...but doing that is pointless. I felt better when I was advocating the best treatment for my daughter....doing something...despite that the drs. kept saying wait and see. My second piece of advice: Do not wait and see. Time is of the essense. Go to a BRACHIAL PLEXUS SPECIALIST. He or she can tell you how severe the injury is and the likelyhood of recovery. They can explain surgical options if needed. Its all overwelming and nervewracking and likea spiral of unending things to do ...but you will feel better for doing it. In the begining and still we do ROM excersises with every diaper change except for in the middle of the night. We do them like 4-5 X a day. We do PT/OT three times a week. Twice with a state program called early intervention where a therapist comes to our house and once with a private PT. Early intervention therapist follow the educational/developmental model and private PTs follow the medical model. If you go to a BPI specialist you will most likely get to see a physical therapist and an occupational therapist that specializes in BPI and they will be a great resource of information.

Do not lose hope. Your child is still young and has much time to heal w/o surguery. Remember that most children with this injury heal without surgery. These boards will be helpful but they will also sting a little so read cautiously. Most of the parents that post regularly have children with severe injuries that have needed surgery. As harsh as it is you have to know that when a parents baby gets better they most often fade away from the boards as their life takes over and they "forget" about this. Do not lose hope. Your child has hand and wrist movement and that is a good sign.

You should also know that it can be very difficult to compare these kids because all injuries are different. Thats why a BPI specialist is so important.
They have seen so many children with injuries they are the best people able to tell you how severe of an injury your child has.

Do not feel guilty about thinking your child is perfect..except... I did that and still do at times. Its a disapointment...plain and simple. You did not expect to deal with this. When I was pregnant I had a specific idea in my head about what my child would be like. When Chloe was born I thought..."this is not what i expection...its not what I wanted" but then I relized its what I have and I love my daughter so I will just have to leave my expectations behind and learn to do things different. I believe every parent goes through this at sometime in their child's life....we just do it earlier.

My daughter has about 70-80 percent return and is 5 months old. She has avoided primary surgery...we'll see if we can avoid surgery in the furture with extensive PT/OT. Do therapy as much as possible and keep her arm moving so if the nerves do heal her arm is strong enough to react.

Good luck and God be with you.
What does not kill you will make you stronger.

Mollie

[admin]

I'd also suggest seeing if there is a support group in your area and contacting them to see if you can talk to some folkes on the phone. Nobody understands the emotions and uncertainty better than the people here who participate on these boards and in the support groups. It helps to connect with those that have and are going through this. The telephone is good because often answers will lead to more questions and you can really pick some people's brains, especially those that might be going through your same states/county early intervention program.

Also, check out the calendar and events board to see if there is a gathering in your area that you could go to.

[Grandma Lou in NH]

Hi, welcome to the club but I'm sorry that we are all

here because of this terrible injury. Others have

mentioned the important things that you should be

doing now. As stated,get your baby to a brachial

plexus specialist ASAP, even if it's initially through

a video tape evaluation. Secondly, doing ROM

exercises several times a day is crucial and an early

intervention person will teach you the correct way to

do them.However, until you can get your baby into

Early Intervention, keep the arm moving. Most

important of all is you.Keep telling yourself that

this injury is not your fault. I know that it's

difficult for you right now but you must be strong for

your baby and you will find that there is no time

for guilt as this injury requires lots of time.

Best wishes, Lou

[MommyOfTwo]

Thanks so much everyone. It really does help to hear that I'm not the only ones with these kinds of feelings. Even in the short amount of time since I've discovered this board I've felt a lot better and stronger about the whole situation. I've also learned how serious this problem can be and at the same time realize that there is hope too.

I do have a question though. A lot of you have mentioned Early Intervention--I'm a little confused. Isn't early intervention seeing the OT/PT's and BPI specialist? Or is it something different. I'm getting the feeling that it's something aside from just seeing the specialist etc. If someone could clarify this that would be great!

[admin]

Early Intervention is a program(s) that is run by the state. For example, our early intervention was run by Easter Seals as well other therapy facilities that are under the program and offer services. They offer (if you qualify) free or minimal costs for therapy for the child. This is usually from birth until three years old. Where are you from? I am sure someone can lead you to a phone number for your area.

[Cara]

You are on the right track. I have tears in my eyes form being taken back to that point in our lives with all the doubts and uncertainties. It will get better. After a while you will end up feeling like an expert. My daughter started Kindergaten this week. That feeling of "she's perfect except" nagged at me too, but know it is like Wow- I can't believe how great a kid I got. She is bright and amazing just for being a four year old but when you add the BPI on top of it.. well she just blows me out of the water with how mature she acts and how she deals with the injury. Basically I am just trying to let you know you will go through stages of dealing with this and things will be easier to deal with as you go down the road. Good luck and God bless. BTW check out early intervention even if you have insurance. Many companies limit OT and PT visits. Also early intervention in Indiana focused on natural surrondings so the therapist would come to the home or daycare. If you are woking this is a lifesaver!