United Brachial Plexus Network, Inc.

Hi, My name is Ashley and Kayla is my daughter. We live in Pensacola, FL. She was born with a right brachial plexus injury due to a shoulder dystocia. To what extent we are still unsure of. She will be 4 months old on April 10. At birth her arm was totally flaccid. Since, she has regained limited shoulder and hand movement. She can extend at the elbow but has yet to flex it. She has full function of all fingers but a weaker grasp. At 2 weeks we saw a neurologist in Pensacola and subsequently started OT. It involved ROM and splinting her hand an wrist. At her latest visit to the neurologist, we were told her arm has not regained enough movement to say she has mild nerve damage. We were referred to Dr. Bhatia in Miami. We have also started PT and I have found a new OT with more BPI experience. This is where we are now. A co-worker of my husbands gave me this link to this website and have gotten a lot of good information thus far. I have read as much as I can but cannot read as much as I want as I have to care for an infant and, as many of you know, it is a very time consuming job. I have a few questions that will probably lead to more but I need somewhere to start. I apologize in advance if these are discussed in other posts and encourage you to direct me to them.

1. In other older posts I have seen mention that Dr. Bhatia is not associated with the BPI group in Miami. Is this still true? And does anyone have any idea why I would be referred to him rather than Dr. Grossman?

2. What tests should I be anticipating? To date we have only had an x-ray done in the hospital at the time of birth.
Can I expect these tests to show the extent of the nerve damage or will exploratory surgery have to be done (which is what I have been told by the neurologist.)?

3. How do I know which doctor to chose? I understand time is of the essence in BPI, but believe that choosing the right doctor is equally important.

4. What type of PT/OT was done with your children? Other than splinting (and the splints they used hindered her from picking up her shoulder) we have had nothing else but ROM.

5. At our first PT appointment, the therapist said that of all the children she worked with that were affected by BPI, all of them had a problem with spitting up. This is true with Kayla and I was curious to know if anyone else had this problem or if anyone knew about research being done?

6. If surgery is required, what am I to expect about the surgery itself? How extensive? How long in the hospital? How is the recovery for the child? What are some of the risks involved?

7. To those of you who are living as adults with BPI without surgical intervention, do you wish you would have had surgery or not? And for those who had surgical intervention was it worth it? I am going to make this decision for my daughter and I want it to be the best decision for her.

I am sure this is just the tip of the iceberg for me and Kayla, but we have a positive outlook. I am completely open to direct communication via the telephone or email. If there are opinions or information which you do not feel comfortable sharing publicly please contact me at kaylasmommy1210@gmail.com. Also if there are links to any of the information some of you found helpful, please include those as well.

Thank you so much for reading my story and I am eager to hear back from all of you!

Ashley

Welcome to the forum. I'm sorry that you had to find us by way of your daughter being injured, but welcome all the same. My name is Tanya, and I have a 4 year old daughter named Amber with a ROBPI (right obstetrical brachial plexus injury due to a birth injury after shoulder dystocia). My daughter has had one surgery at age 25 months on her shoulder called the anterior capsule release due to her shoulder being subluxed. We see Dr. Scott Kozin at Shriner's Hospital in Philadelphia and are very happy with our experience thus far. We started out on the wrong path of doctors in the beginning, so we don't know for sure if primary surgery would have been an option for our daughter as it was never discussed because we were just seeing "local orthopedics" rather than specialists until well past the time of primary surgery. It's great that you've already started down the right path. Now for your questions.

1. In other older posts I have seen mention that Dr. Bhatia is not associated with the BPI group in Miami. Is this still true? And does anyone have any idea why I would be referred to him rather than Dr. Grossman?
----I'm not familiar with Dr.Bhatia. I've heard Dr. Grossman's name mentioned before by a few families, but have no personal experience with him. I don't know how their set up works. You were probably referred to Dr. Bhatia because your doctor has heard of him. Get information on many doctors before making your final decsions. Get many opinions from many doctors.

2. What tests should I be anticipating? To date we have only had an x-ray done in the hospital at the time of birth. Can I expect these tests to show the extent of the nerve damage or will exploratory surgery have to be done (which is what I have been told by the neurologist.)?
----You probably had an x-ray to check for a fractured clavicle in the hospital. Routine. You can expect certain tests depending on the doctor you go to. Some doctors do MRI's, some do CT scans. Some do EMG's. All do physical exams. Sometimes surgery is the only way to get a final look at what is really happening, but some of these tests really can give excellent information to help you to decide IF surgery is even necessary.

3. How do I know which doctor to chose? I understand time is of the essence in BPI, but believe that choosing the right doctor is equally important.
----This is always a HOT TOPIC on this board as everyone is so protective of their choice of doctor. Search on the boards and you will find many threads about doctors. There is also a medical resource directory on UBPN that lists doctors. We personally see Dr. Kozin and love his care and expertise. We've consulted with Dr. Waters as well. You will heard the same thoughts echoed from many families about many doctors, along with differing opinions. It's a very difficult decision to choose which doctor to bring your child to. You need to consider how aggressive do you want your doctor to be, how experienced do you want your doctor to be, how up to date do you want them, how is the support staff, what procedures and with what success does that doctor do, convenience of getting to that doctor's care can also be an issue for some families as well because some of these BPI doctors are across the country for some.

4. What type of PT/OT was done with your children? Other than splinting (and the splints they used hindered her from picking up her shoulder) we have had nothing else but ROM.
---A lot of play therapy was and still is done with my child, even as an infant. ROM is very important a few times a day to prevent tightening. Support the scapula! Splints can widely vary, depening on the need. We've used a McKie splint with a supinator strap when my daughter was an infant (worked great), and now she is currently using TheraTogs (just started a couple weeks ago). She's also worn a firm, molded splint on her elbow to keep it straight at night to prevent a return of elbow contracture during growth spurts.

5. At our first PT appointment, the therapist said that of all the children she worked with that were affected by BPI, all of them had a problem with spitting up. This is true with Kayla and I was curious to know if anyone else had this problem or if anyone knew about research being done?
----My daughter NEVER had trouble with spitting up, and I'm a nurse that works in labor and delivery and pediatrics, so I'd know. Maybe she has a connection with the phrenic nerve? Also, there can be feeding difficulties with BPI children, I have seen that noted in my research, but I can't place it right now.

6. If surgery is required, what am I to expect about the surgery itself? How extensive? How long in the hospital? How is the recovery for the child? What are some of the risks involved?
----This depends on the surgery and doctor.

I didn't answer #7 because Amber's not an adult. I hope my answers are helpful. Please feel free to post any questions here as we have ALL been in your shoes before and have all learned so much by asking questions and getting help and answers from our FAMILY here at UBPN.

Tanya in NY
Amber's Mom, ROBPI, 4 years old

Hello Ashley,
WELCOME to our UBPN FAMILY. We ARE a Family giving Support AND Love along with information and Shared Experiences to one another...Parents, Adults, as well as teens. I personally enjoy answering Questions and please know that there are NO DUMB QUESTIONS anywhere on ANY of the Forum Message Boards and you are welcome on ALL of the Message Boards too. By the way, we Vent often 'cause it IS a Safe understanding,commpassionate place to do it.

To answer your question about surgery...I am an 68 yr old LOBPI(Left-sided Brachial Plexus Birth Injury also known as Erb's Palsy)and IF there had been surgeries available back in the "Dark Ages of Erb's Palsy"...I DO DEFINITELY WISH I HAD EVERY AVAILABLE procedure available because as an adult I Overcompensated(Overused) my "good" side and consequently have secondary physical issues because of that overuse.

Ashley, I hope you post often and come here often, as we continue to learn from each other. I am still learning new things from everybody's posts, even at 68!!

HUGS all around,
Carolyn J
LOBPI/68 & Proud of it!!

ps..FYI,you can click on anyones name,IN BLUE TYPE, & It will bring up a list of their posts.


Message was edited by: Carolyn J

Welcome Ashley! I'm sorry about your daughter's injury but glad you found this board. It's an extremely informative and supportive place
My daughter Harper has a LOBPI due to shoulder dystocia. She is a little over 5 mos old so I'm new to all of this too. She had no movement at all at birth but now has strong hand, finger, wrist and tricep function. She has limited shoulder and barely any bicep function.
Even though I'm not as experienced as most of the people here I'll try to answer your questions with what we have experienced so far because I know I like reading posts from people at the same stage we are in the whole journey.

1. I'm not familiar with either of these Dr's but I'm sure you were given one name because that is the Dr. your Dr. was familiar with

2. As of yet we've only had an X-ray as well but we go for a MRI on Wednesday!

3. Choosing a Dr. is a very personal decision. Do as much research as you can (this board is VERY helpful) and then schedule visits with a couple of Dr's and see who you feel the most comfortable with. We use Dr. Kozin and I can't say enough wonderful things about him so far.

4.We have PT/OT 2x a week with Early Intervention. Mostly play therapy and ROM exercises. We have not done any splinting yet.

5.My daughter has not had any problems with spitting up.

6.We have not had any surgeries yet. After the MRI we will know more and will probably be heading in that direction. Dr. Kozin believes her shoulder is subluxed so she will most like be having anterior capsule release surgery on May 22. As for Primary surgery, we are still not sure if she will need it. We will see how her arm recovers after the shoulder surgery.

We wish you and Kayla the best

~Lisa
Mom to Harper, LOBPI 5 mos.

Hi Ashley,
My name is Dawn I'm Mom to Cassidy 12 months old with a robpi due to the same situation as Kayla at birth. I can't answer any doctor questions as I am from Canada. However I can share my experiences with you. It sounds like you are doing everything right as far as therapy. The PT is so very important. My daughter was also born with a limp arm,before we left the hospital she had regained hand movement,we didn't see any more improvement after that until about 8 weeks,and that is where her healing stopped. They did a nerve conduction study on Cassidy which is painful and did not show very much. (except that she needed to be referred to a specialist in Toronto)Once she had been examined by Dr Clarke in Toronto we knew that she was a candidate for the Nerve graph surgery or primary surgery as it is called here. To determine the extent of her injury they did a mylogram and an ultrasound (a Mylogram is where they inject dye into the back and it acts like an x-ray only instead of showing bone,it shows muscles, tendons and nerves.) That gave the doctors a clear indication of her injury and what they would be doing when the went in. Cassidy had her primary surgery on February 15th and I won't lie it was scary and stressful. The surgery was 12 hours long and consisted of them removing nerves from the back of her legs and graphing them to where her damaged nerves were. she had a four day hospital stay, she recovered really well. We have been told it will be about 6 months before we see any improvement so for now her arm is limp again. We do Pt with her twice a day and I think that it is the most important thing right now, keeping her muscles loose so when she regains use they'll work properly. Our Doctor told us that she has an 85 percent chance that she will improve from what she was. There are no guarantees it just depends how well the body heals, nerves are such fragile things. Anyway I hope I could be of some help, please don't hesitate to email me if you want to talk more or have more questions I'm fairly new at this myself so I'll try my best to help. take care, Dawn
vmichael_lees@hotmail.com

HI, I can only answer #7.

I had a tendon transfer at 14 yrs old and am VERY glad that I had it and do wish there was more done when I was younger... or even now I would do more.

Marieke (31, LOBPI)

Hi, My name is Amy Clark, and I am Alexis's mom, 5 years old, ROBPI. She left the hospital with flaccid arm, and regained absolutely no movement until after her first surgery. We have been seeing Dr. Waters since Lexi was three months old, with consultations with Dr. Kozin. Both are excellent Drs., but I'm sure there are other good ones out there. We researched both extensively, and were happy with bedside care for both.

As far as initial testing, Lexi had an X-ray at birth, but only physicals until her primary surgery. Dr. Waters told us he would choose to do exploratory/corrective nerve surgery because of what he could physically observe her progress to be, and that an MRI was an unnecessary "extra" to have a baby have to be subjected to (his opinion, I'm sure).

No spitting up problems with Lexi.

Alexis has had three surgeries to date. The first was the primary nerve graft. I, also, will not lie. The surgery took over ten hours. Recovery was difficult, with a huge soft cast holding her arm against her body. She was in the hospital for two nights. In retrospect, it went by pretty quickly, however, Alexis's surgery was rather unsuccessful. Several months after surgery, she gained the ability to partially contract her biceps, but Dr. Waters said she may have gained that back without the surgery. Second surgery was a nerve transfer to her deltoid from a nerve connected to an intercostal muscle. That surgery was unsuccessful as well. Her third surgery was a muscle transfer six months ago, also with minimal success so far. Faced with the choice again, however, I would still go with the surgeries, as I want to be able to tell her we did everything possible to help her later on. We may have to do muscle transfers to her fingers, and we will most likely elect to have the surgery done.

As far as therapy, she has been receiving weekly therapy at a nearby hospital since she was born. We have tried splinting (several types), e-stim, ROM and now strengthening exercises since she is older. Pool therapy has been a big part of her therapy as well. We do daily therapy with her, as well, and try to incorporate therapy into her play, too.

I don't mean to be at all negative with my daughter's lack of success, just to say that we seem to have been through it all! If you have any questions about anything, I would be happy to talk to you as well. It sounds like your daughter's injury is not as severe as Alexis's and I hope she experiences as full a recovery as can be expected!! My personal email address is amyclark2@yahoo.com. Feel free to email me with any questions. Thanks for posting, and good luck!

You've gotten some great answers already to your questions. I'm sure you will have more questions along this journey, and you are welcome to ask them here.

I wanted to comment only on question #7, because I had surgeries both as a child and as an adult. I gained from all those surgeries and am grateful to my parents for seeking out (not easy in the 1950s and 60s) and finding orthopedic surgeons with experience with brachial plexus injuries. But the decision over surgery is not an easy one and I think it is harder for the parents than it is for the one injured.

This is not a simple injury, and the differences in extent of injury vary widely. It may seem overwhelming as you learn more.

UBPB has a magazine that it publishes, called Outreach, and the subscription to it is free. I can send you back issues as well, and you will find that Outreach is full of stories of families and their experiences, and articles by doctors and therapists. If you would like to be added to the UBPN mailing list, send me (nancy@ubpn.org) your mailing address and I'll get some issues out to you.

Nancy Birk
UBPN President

Thanks for all the great feedback. Keep it coming. Just wanted to say that after reading on this thread and others, we have chosen to go see Dr. Kozin. Our appointment is April 25. I am excited to have her be seen with someone with such expertise in BPI. I am going to start a new thread on another topic dealing with activity, PT, and tummy time. Again I loved reading all of the responses and I am so glad I have found this community for support!
Ashley

Hi Ashley,

I'm Joanie. I am 58 years old, with a Left Obstetrical Brachial Plexus Injury (LOBPI).

I had tendon transfer surgery to correct a droopy wrist, when I was 20 or 21. If my parents had known about this surgery sooner, I'm sure that I would have had it sooner. I'm glad that I had this surgery, for cosmetic reasons alone, though I'm sure that it has helped me functionally, as well.

If surgeries had been available when I was a child, I'm sure that my parents would have done everything that they could have done to help me.

Joanie