Nishant OBPI

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
Bijendra
Posts: 5
Joined: Sat Sep 28, 2002 12:53 am

Nishant OBPI

Post by Bijendra »

Dear all,
I am the father of Nishant contacting you all. My son Nishant was born on 16-Aug-02. As on today (28-Sep-02) he is 43 days old. His weight immediately after birth was 3.9 Kgs. He was pulled out by applying forceps during delivery. I am very sad to inform you that his RIGHT arm is not at all moving including fingers, wrist, elbow and shoulder. Doctors inform me that it due is Brachial Plexus Injury.
I want to know the following:
1. What are the precaution that I must take so that the recovery is not slowed down and there is no further damage.
2. What physical support can I give to his neck / back / shoulder / arm during shifting him from bed to breast feeding so that his neck and arm is disturbed minimum . Is there any special way to handle the baby while he is breast feeding.
3. Can you please send me Range of Motion exercise for his physiotherapy. I am in touch with a PT since 5th day after birth and Nishat PT is going on with her and we in home also repeat the PT thrice a day. But she (physitherapist) has not yet handled any birth BPI so far and I am concerned that the ROM excercise going on are correct and thus request for any page on ROM preferably with illustrations.
4. When is the best time (months after birth) for surgery, if required.
Best Regards,
Bijendra S. Verma
N-130, Sector 25,
Noida – 201301, India
Ph : 0091 120 4538624
jennyb
Posts: 1183
Joined: Fri Nov 02, 2001 5:24 pm
Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.

Re: Nishant OBPI

Post by jennyb »

Hello Bijendra, so sorry to hear about Nishant's injury. There is a specialist in Poona who has a lot of experience with these injuries, here is a link to information about him. http://www.brachialplexussurgery.com/dranilbhatia.htm

For information about the best way to look after Nishant in these early days, visit the Home page on this site and click on the button about Awareness, there is a lot of information for parents there. It is important for your son to see a specialist as soon as possible.
Best of luck in your search for information, and best wishes to your family at this difficult time. Jen NZ
Karen Hillyer
Posts: 562
Joined: Fri Sep 06, 2002 1:36 pm

Re: Nishant OBPI

Post by Karen Hillyer »

Hello Bijendra
Congratulaitons on the birth of a son -you must be very proud. I am so sorry that his birth has been marred by his injury.
I am in contact with another family who have a child of 2 years old who also has a Brachial Plexus Injury. If you would like to e mail me at; erbspalsygroup@supanet.com I will be happy to give you his e mail address. he is keen to make contact with other families in India who also have children with this injury.
I hope this information will be helpful to your family
Kindest wishes
Karen Hillyer
francine
Posts: 3656
Joined: Mon Nov 05, 2001 12:52 pm

Re: Nishant OBPI

Post by francine »

Hello Bijendra,

I'm very sorry to hear that your little baby was injured during birth. Yet he is so lucky that his daddy is educating himself about this injury very early on!

I want to get to your questions...

1. What are the precaution that I must take so that the recovery is not slowed down and there is no further damage.
Allow the arm to move freely - meaning don't tie the arm down or pin the arm to keep it still. Make sure that no one picks your son up by the arms- they need to be cautious about where the arm is when you are picking him up- so that it doesn't get stuck behind him, etc. Also when you are dressing him, dress his affected arm first and then his other arm - make sure that the arm doesn't stretch in an unnatural position.

2. What physical support can I give to his neck / back / shoulder / arm during shifting him from bed to breast feeding so that his neck and arm is disturbed minimum . Is there any special way to handle the baby while he is breast feeding.
We always lifted Maia by putting a hand under her head and a hand underneath her bottom and then sliding her into my arms. When I breastfed her I would sit up and put a bed pillow on my lap and have a smaller very soft one for underneath her head. Breastfeeding never really bothered her and it didn't seem like I had a problem with it. But I did support her head with a pillow and made sure that her head/neck wasn't stretched sideways. I don't think anything would have stopped her from eating! :) Also - she ate very well after surgery, incision and all. She didn't nurse on that side for a few days but then was fine with it. But then, at the hospital where my daughter was operated on - they did not immobilize the child's head - they may do this in other facilities. (in which case your wife can pump out her breast milk to feed through a bottle)

3. Can you please send me Range of Motion exercise for his physiotherapy. I am in touch with a PT since 5th day after birth and Nishat PT is going on with her and we in home also repeat the PT thrice a day. But she (physitherapist) has not yet handled any birth BPI so far and I am concerned that the ROM excercise going on are correct and thus request for any page on ROM preferably with illustrations.
I emailed you range of motion information but please do them at first with your PT. The idea behind this is to keep the joints flexible. But you certainly don't want to push the arm too hard and cause more injury. We have always done our ROM very compassionately and not in a way that would cause more harm. Your Nishant will let you know also when he doesn't like it. Please print off this sheet for your therapists http://ubpn.org/awareness/A2002storment.html - it is a therapy guidline sheet written by a therapist who was the lead therapist at Texas Children's Hospital (the nations largest bpi clinic).

4. When is the best time (months after birth) for surgery, if required.
There is a page on here for you to read that discusses this http://ubpn.org/awareness/A2002newparents.html. Most of the information on the sheet is generic with exception of the state provided therapy which is just in the U.S. What they look for is biceps - meaning hand to mouth while the child is sitting up. This comes in around the 4th month. But many clinics assess this differently.

I would suggest that you also contact Pr. Gilbert in Paris. He is a brachial plexus expert who is very well known. In trying to help another family from Bangladesh, I learned that there is the possibility of foundation funding to reduce the costs of surgery and the hospital stay. His contact information is found on his website www.obstetricalpalsy.net

Institut de la Main
18, Rue Jouvenet
75016 Paris - France

Tel : (33) 1 42 15 42 20
Fax : (33) 1 42 15 40 01

e-mail: a.gilbert@gsante.fr

Also - here is the website that I set up for my own daughter. It may have some information that will be helpful....although we are in the U.S. so there will be somethings that wouldn't apply.

http://www.injurednewborn.com/maia/homepage.html

Please let us all know how we can further help you. Ask as many questions as you can and keep in touch.

-francine litz
mom to maia - age 4 1/2 left brachial plexus injury



francine
Posts: 3656
Joined: Mon Nov 05, 2001 12:52 pm

Re: Nishant OBPI

Post by francine »

Bijendra - the email I send you just bounced back because your mailbox is filled. Here is my email:
francine@injurednewborn.com

let me know when I should resend it

-francine
Bijendra
Posts: 5
Joined: Sat Sep 28, 2002 12:53 am

Re: Nishant OBPI

Post by Bijendra »

Dear Jen,
I thank you for your valuable and kind response. I was not able to reply due to getting Nishant medical checkup done EMG/NCV and corresponding with specialists in this area. Thank you for your site reference and I shall contact the specialist today.
Best Regards,
Bijendra
Bijendra
Posts: 5
Joined: Sat Sep 28, 2002 12:53 am

Re: Nishant OBPI

Post by Bijendra »

Dear Karen Hillyer
I thank you for your kind response. I was not able to reply due to getting Nishant medical checkup done EMG/NCV and corresponding with specialists in this area.
I shall contact you on your emil ID shortly after log out from here,
Best Regards,
Bijendra
Bijendra
Posts: 5
Joined: Sat Sep 28, 2002 12:53 am

Re: Nishant OBPI

Post by Bijendra »

Dear Francine,
I thank you for your kind response. I was not able to reply due to getting Nishant medical checkup done EMG/NCV and corresponding with specialists in this area.
How is Maia now ?
The information you have given me is really very good and I will follow every word. Meanwhile I have already contacted Dr Alain Gilbert and he has also given me the site ID. I await his second reply mail any time.
Can you please inform me more about donation/ funding oganisations. I learn that the cost of surgery if needed will be very high.
Best Regards,
Bijendra
SPAINR
Posts: 8
Joined: Wed Oct 09, 2002 5:21 pm

Re: Nishant OBPI

Post by SPAINR »

HELP ! I JUST FOUND OUT MY SON RYAN WHOS 18 MOS OLD HAS BRACHIAL PLEXUS INJURY FROM BIRTH I HAD TO HAVE AN EMERGENCY C SECTION THEY NEVER TOLD ME SOMETHING WAS WRONG I'M 30 YRS OLD AND I WORK AT KAISER AS A MEDICAL ASSIT I FOUND OUT ABOUT MY SON ON THE 19TH OF LAST MONTH I'VE BEEN TELLING THEM ABOUT MY SON R ARM SINCE BIRTH THEY SAID HE'S JUST LEFT HANDED HELL OUT GROW IT WELL HE HASN'T KAISER TREATS MY SON I WORK HERE AND NOW
I FEEL ASHAMED I DIDN'T PUSH IT HARD NOW FROM WHAT I SEE I'VE LOST TO MUCH TIME HE CRAWLS UP ON A LADDER WITH HIS L HAND AND R ELBOW HIS PEDS DR ON VAC SAID HE WAS VERY SORRY HE DIDN'T SEE IT BEFORE SENT ME TO NERO THEY SCHEDULED A MRI ON 11/5 NOW I KNOW I CAN'T WAIT THAT LONG PLEASE HELP ME .
Bijendra
Posts: 5
Joined: Sat Sep 28, 2002 12:53 am

Re: Nishant OBPI

Post by Bijendra »

Dear Ryan,
Please contact a BPI "surgical" specialist as soon as possible. The list of names and address of BPI specialist are given in the site. Please write me a mail for any more specific info that I may be able to give you.
Regards,
Bijendra
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