Mother of Newborn with Erb's Palsy
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reajabrown
Mother of Newborn with Erb's Palsy
My daughter Reaja was born January 9, 2007 weighing in at 8lbs 6 oz. She is my 5th and biggest child that I delivered. My doctor who was strongly against induction informed me on my last OB visit that he would in fact schedule me for induction on my due date. I had several ultrasound's even up until December 2006 because I had tested positive for downs syndrome so I am not sure why no-one knew of my daughters size. She was originally breech, then transverse then finally in the head down position.
Reaja is approaching 8 weeks and has movement in her right hand, fingers and even movement of the arm although she has decreased control. I am prayerful that she will recover fully. The most upsetting part of it all is that I was not told that this condition had a name. The doctors, hospital and orthopedic specialist never let on that she had a condition and in fact the pediatrician informed me that she would regain full use within 3 weeks which is untrue. I discovered the term Erb's Palsy after reading the scribble on the discharge papers I had received that had the wrong baby's information listed. There were 2 baby's born on the same day with the same last name so they included the other child's birth information on my daughters records. The other child was a boy.
Reaja is approaching 8 weeks and has movement in her right hand, fingers and even movement of the arm although she has decreased control. I am prayerful that she will recover fully. The most upsetting part of it all is that I was not told that this condition had a name. The doctors, hospital and orthopedic specialist never let on that she had a condition and in fact the pediatrician informed me that she would regain full use within 3 weeks which is untrue. I discovered the term Erb's Palsy after reading the scribble on the discharge papers I had received that had the wrong baby's information listed. There were 2 baby's born on the same day with the same last name so they included the other child's birth information on my daughters records. The other child was a boy.
Re: Mother of Newborn with Erb's Palsy
La Verne,
I am so glad you found these message boards, but so sorry for the reason you are here. I too will pray for your child and hopefully she will recover well.
Please don't be too angry at the pediatrician. They only know what they are told, and the "common knowledge" for a long time now has been that 90 percent of these kids fully recover, and recovery within 3 weeks surely is very common. No one knows exactly the statistics, but a good proportion of kids do only experience "temporary shutdown" of the nerves and fully recover. For us, we were initially told it should be better in 2 days, then 2 weeks, then 2 months, then... well, we stopped talking to that practitioner at that point.
I know that doctors don't want to unnecessarily scare parents who, very likely, WILL see their child fully recover within a few weeks. But it does leave the rest of us, whose children have more permanent injuries, feeling very misled and betrayed. In time, I hope that your anger will give way to peace with what happend, and that you are able to enjoy the moments of her childhood where you are not thinking about her arm and the negative events surrounding her birth.
Until then, we all know how you feel and we are there for you.
Kate
I am so glad you found these message boards, but so sorry for the reason you are here. I too will pray for your child and hopefully she will recover well.
Please don't be too angry at the pediatrician. They only know what they are told, and the "common knowledge" for a long time now has been that 90 percent of these kids fully recover, and recovery within 3 weeks surely is very common. No one knows exactly the statistics, but a good proportion of kids do only experience "temporary shutdown" of the nerves and fully recover. For us, we were initially told it should be better in 2 days, then 2 weeks, then 2 months, then... well, we stopped talking to that practitioner at that point.
I know that doctors don't want to unnecessarily scare parents who, very likely, WILL see their child fully recover within a few weeks. But it does leave the rest of us, whose children have more permanent injuries, feeling very misled and betrayed. In time, I hope that your anger will give way to peace with what happend, and that you are able to enjoy the moments of her childhood where you are not thinking about her arm and the negative events surrounding her birth.
Until then, we all know how you feel and we are there for you.
Kate
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Tanya in NY
- Posts: 935
- Joined: Mon May 03, 2004 10:51 am
- Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
- Location: NY State
- Contact:
Re: Mother of Newborn with Erb's Palsy
Welcome to the boards. I'm so glad you found us. I'm so sorry your child was injured.
You hopefully will find a wonderful support system on these boards, along with lots of useful information as I have over the last few years. Please get your child into OT/PT right away and start doing ROM (range of motion) exercises right away that should be taught to you by a trained person. You should also schedule an appointment with a BPI (brachial plexus injury) specialist. You can find a list of doctors on the medical resource page to find one that is closest to you. There are a number of them, but don't count on them being very close as many of us have learned that we have to travel to see our children's specialist. It's well worth it we have learned though.
Kate does make a point about some doctors not wanting to "scare parents" in the beginning by not telling them this could be a permanent injury. Please, everyone reading this don't get upset...I didn't say I agree with this. I'm just saying that I can see where they are coming from. As most of you know, I am a Labor and Delivery nurse and Mom to a ROBPI child. I recently was contacted by our hospital's lawyer to review a conversation I had had with a set of parents almost 2 years ago (whew...did that tax my brain), the day after their child was injured at the hospital I work at (I was not at their delivery). I educate families after an injury to their child (thank goodness it doesn't happen often, but it does happen). I had come in on my day off from work and talked frankly with this family. I had laid it on the line for this family saying that basically nobody could predict how their child's injury would turn out. Thier child may/may not recover completely, may/may not require surgery, may/may not require lifelong interventions. They heard "your child will NOT recover and WILL require surgery and WILL require lifelong intervention," per their deposition. I was crushed as of course I could not recall our exact conversation of 2 years ago, but I knew in my heart that I would NEVER have told them these things. I walked away from that conversation with the hospital lawyer a little more careful of my wording when speaking with patients and their families now because in a stressful situation, I understand they may not heard what you may be telling them, but instead may hear something different even though it is nobody's fault in how it was told. Does this make sense?
Anyway, once again, I'm glad you've found us at UBPN.
Tanya in NY
Amber's Mom, ROBPI, 4 years old
You hopefully will find a wonderful support system on these boards, along with lots of useful information as I have over the last few years. Please get your child into OT/PT right away and start doing ROM (range of motion) exercises right away that should be taught to you by a trained person. You should also schedule an appointment with a BPI (brachial plexus injury) specialist. You can find a list of doctors on the medical resource page to find one that is closest to you. There are a number of them, but don't count on them being very close as many of us have learned that we have to travel to see our children's specialist. It's well worth it we have learned though.
Kate does make a point about some doctors not wanting to "scare parents" in the beginning by not telling them this could be a permanent injury. Please, everyone reading this don't get upset...I didn't say I agree with this. I'm just saying that I can see where they are coming from. As most of you know, I am a Labor and Delivery nurse and Mom to a ROBPI child. I recently was contacted by our hospital's lawyer to review a conversation I had had with a set of parents almost 2 years ago (whew...did that tax my brain), the day after their child was injured at the hospital I work at (I was not at their delivery). I educate families after an injury to their child (thank goodness it doesn't happen often, but it does happen). I had come in on my day off from work and talked frankly with this family. I had laid it on the line for this family saying that basically nobody could predict how their child's injury would turn out. Thier child may/may not recover completely, may/may not require surgery, may/may not require lifelong interventions. They heard "your child will NOT recover and WILL require surgery and WILL require lifelong intervention," per their deposition. I was crushed as of course I could not recall our exact conversation of 2 years ago, but I knew in my heart that I would NEVER have told them these things. I walked away from that conversation with the hospital lawyer a little more careful of my wording when speaking with patients and their families now because in a stressful situation, I understand they may not heard what you may be telling them, but instead may hear something different even though it is nobody's fault in how it was told. Does this make sense?
Anyway, once again, I'm glad you've found us at UBPN.
Tanya in NY
Amber's Mom, ROBPI, 4 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old
Re: Mother of Newborn with Erb's Palsy
La Verne,
I, too, am glad that you found UBPN, but I'm sorry for the reason that you need us.
Tanya,
Yes, it makes sense. The surgeon who had performed a biopsy on me called to say that it was malignant. I wasn't expecting that diagnosis, but I tried to get over the shock, because I knew that whatever else she was going to say was important, and I needed to hear it. I know that she repeated herself several times to be sure that I was getting the message even though I was in shock. She said repeatedly, "You will not lose your life. You will not even lose your breast." Some of the shock had worn off by the time I hung up the phone. I clung to the words that she had repeated, and got myself ready for the next step in my treatment.
That was on a Friday afternoon in 1999. That evening my Sabbath started, and with that particular evening, Rosh Hashanah also started. I had a lot on my mind then, and years have passed, but even now I can still remember that my surgeon repeated her message several times.
I guess what I'm saying is that you have a better chance of getting your message across to new parents who are in shock, if you word it carefully and keep repeating it.
Joanie
I, too, am glad that you found UBPN, but I'm sorry for the reason that you need us.
Tanya,
Yes, it makes sense. The surgeon who had performed a biopsy on me called to say that it was malignant. I wasn't expecting that diagnosis, but I tried to get over the shock, because I knew that whatever else she was going to say was important, and I needed to hear it. I know that she repeated herself several times to be sure that I was getting the message even though I was in shock. She said repeatedly, "You will not lose your life. You will not even lose your breast." Some of the shock had worn off by the time I hung up the phone. I clung to the words that she had repeated, and got myself ready for the next step in my treatment.
That was on a Friday afternoon in 1999. That evening my Sabbath started, and with that particular evening, Rosh Hashanah also started. I had a lot on my mind then, and years have passed, but even now I can still remember that my surgeon repeated her message several times.
I guess what I'm saying is that you have a better chance of getting your message across to new parents who are in shock, if you word it carefully and keep repeating it.
Joanie
Re: Mother of Newborn with Erb's Palsy
You are in the right place to gather information. My advice to you is to get the range of motion exercises started. I had an OT actually do home visits for a few months when my son was an infant. She didn't know much more than I did about the injury, so we found the Range of Motion exercises on a Brachial Plexus dr's website. I would do them at every diaper change, and she would come 2 times a week. Best wishes to you and your baby, Reaja.
April
April
Re: Mother of Newborn with Erb's Palsy
I went through the same song and dance. "Oh she should start using it w/in 2 weeks." I even took her to a second opinion, and they said the same. I would find her a therapist right away and PLEASE do the exercises. I think they really saved me daughters arm. You are in my prayers. My daughter could move her left fingers, and hand at the wrist. Therapy helped her so much. Don't give up!!
