United Brachial Plexus Network, Inc.

Im a first time new mom to a beautiful 6 week old little girl. she has erbs palsy - rt arm. She has always been able to move her hand and finger she has a strong grip. But she hasnt yet moved her elbow or lifted her arm up. It seems she shrugs her shoulder. We do ROM exercises everyday and OT every week. How long should we wait to see any improvement and what tests can tell us exactly how bad her injury is? Also, i was due to go back to work but I just cant trust that someone will take good care of her and not injure her arm worse. How many of you stayed home with your baby due to this injury?

I am sorry to hear about your daughter. A concern I had about working was trusting somebody to safely lift my daughter. It is an instinct to lift a baby under the arms and it is difficult to get used to "scooping" the baby and at the same time supporting the babies neck. Betsy

I'm sorry that your daughter was injured! I waited 4 months to go back to work, and it was so hard to find someone I trusted. We ended up getting a nanny so that I could train her myself to care for Alaina. I had her come to the house a few times before she was by herself and showed her my little "tricks" for caring for a kiddo with a BPI. My daughter loved her and we were so sad to see her move away! Alaina is almost 2 now, so she's in regular day care, but I always conduct education with the teachers in her class and do special staff education during awareness week. Just take control of the interview process, educate, and follow up. Your daughter will benefit from the social interaction and you will benefit from having the knowledge that she's well cared for.
Also, to answer the first part of your question, I'm not sure the extent of Alaina's injury due to the fact that she can't tell the doctors exactly what she's feeling and we haven't had many tests done (I'm still very doctor shy even with BPI specialists). However, she had no movement other than finger movement until she was almost 4 months old. I saw her lift her arm from the floor just millimeters. We went through OT every week since she was 6 days old, taping, bracing, ROM, and massage. Now she is able to reach up in the front almost as much as the unaffected arm. Her OT is still working on lateral movement and sensory issues, but hang in there! These BPI kiddos are truly amazing and resilient! They will surprise you with their ability to heal what their body can and learn to adapt to what it cannot.
Good luck!
Emily

I completely understand your fears. My son Javier is almost six, ROBPI. I stayed home with him until he was 2. I was in school when I got pregnant and planned to go right to work all along, then plans changed. I wouldn't give back that time for anything in the world and am so glad we were able to work it out. Being on a TIGHT budget was so worth the peace of mind.

Hope this helps,

Marlyn

My wife and I decided that it would be best if she stayed home with Lily. We would have done this either way. I don't miss the money (that much) that she brought in. We seem to be the minority these days, its seems there is more of a focus on money then family. I dont want to offend anyone, and I know some familys have the need for both parents working. But some familys will do just fine on one income, but choose to work.
IMHO parenting is the most important job you can have, if you can manage staying at home ...go for it!

I am so sorry to hear about your daughter. My daughters injury sounds vary similar to yours. My daughter Lindsey was born on 12-15-09 at 11 lbs. Here shoulder was stuck, after the Dr. pulled and pulled on her neck he finally reached in and pulled one arm out to free the other. When she was first born she had finger movement a little wrist and she could shrug her shoulder a little. At three months is when she first lifted her arm, and around 4 months we are starting to see a little flicker of elbow. Currently she is scheduled for her first surgery on June 8th with Dr. Kozin at shriners in Philadelphia.

I would not wait to see a specialist, they like to see new patients at the 4 week mark so they can get a good idea of a starting point to base improvements on. Some Dr's will do EMG to check to see the level of damange to the nerve, but I belive most beieve that it is to painful and inclusive to be done on infants. Time is the best test to see if the nerve was severed or not.

Lindsey is currently in daycare 2 days a week and home with Grandparents 3 (after surgery we will be home with her for the 3 week recovery, than back to daycare). Lindsey started daycare at 3 months old. I was very nervous at first but realized there was a reason that I had chosen this daycare for her and my 3 year old daughter, I know they will take care of her. They are very involved always asking if there is any new exercises they should be doing, also her PT will go there every month or so. I think for me the hardest thing was worrying about them not positioning her arm right, but 2 days before she started is when she started to move the arm a little, which made it easier.

Please feel free to e-mail me if you have any questions you would like to ask off-line.

Marlene

I too am so sorry to hear about your little angel. We too like you were very concerned about leaving our daughter with people that did not know how to care for her at the time. We were forunate to have family close by that was able to step in and help us when I had to go back to work.
I remember the wait process, and awaking up each day to hope that you see them move more. Our daughter had only upward wrist movement and index finger that moved. I remember the day that we went to see our local doctor and how he told us that she had no more return as of 3 months old and we needed surgical intervention. Immediately we started looking for BP specialist. Some we did not like the testing that she was going to have to endure, and we had about 4 opinions from BP doctors, and decided to take her to Dr. Kozin in Philly. She had her nerve grafting surgery in March of last year (7mths), she is now 21 months old and has a remarkable return. I would love to be able to share more with you, please feel free to email me offline.
Anna

Oh your post brings back such painful memories. My Jessica was also a forceps delivery. I was told that if she wasn't moving fingers after a few days she would require surgery at 3 months. In our case her diaphragm/breathing was also affected. Something even the nuerologist over looked. Every injury is different. I stayed home with her for 8 months. She had two surgeries ( 1st at 7 weeks, 2nd at 3 mths) during that time. After that, we had a nanny that took care of her. The earlier the nerve grafting (if necessary) is done the better.

thank you all for the repliess! Kaitlin is 3 yrs old now and I have been at home with her. She started showing arm movement at a little over 3 months and progressed through her first and second year. She is currently showing some winging and of course her shoulder slumps with the typical bpi stance (arm and hand bent with backward rotation) I must say she has come leaps and bounds from where we were and she has managed to adapt very well. We are currently dealing with dressing herself issues and tricycle riding... she pulls to the left since its stronger and has a hard time holing on to the handles, but she keeps trying! we have 3 different doctors giving us 3 different opinions concerning surgery rt now, so not sure where to go from here.