Ava's visit with Dr. Hentz (5.5 months)

[solson]

We saw the doctor. He has cleared Ava from any surgery. Her elbow flexion went from 40 degrees to 90 degrees and she should be on her way to moving her hand to her mouth soon. He again felt that surgery wouldnt improve things anymore than nature already is. He considers her improvement good but not excellent. Excellent would've been to see this recovery 2 months ago but she is doing well. He agreed with our neurologist that we should expect some mild deficit in her ability to move her arm above her head and that one arm will most likely be shorter than the other. He would like us to continue to see him as he discussed with us the possibility of muscle transfer surgery between 2-6 years of age to improve the mobility of her arm. Said to continue with the PT and stretches. He doesnt feel OBPI kids miss developmental milestones (crawling, etc) but warned us she may do it differntly as she invents her own ways of using her arm. So overall, good news. He said there wont be anything in life that she will be unable to do though she may not do it the way we are used to seeing it done.

I asked about subsequent births and OBPI risk. He says he hasnt seen that familes with one regulary have injuries with their other births. He says it comes down to how many risk factors I meet. 8lbs wasnt large he said but if I have a small pelvis it could be afactor. Like I told Jon, the man gives you information without giving you any information. He really never answers a question directly.

Overall I was pleased. A little dissapointed that she is falling short on the recovery curve but at least happy to hear that long term recovery is good. I was doing some more reading on it last night and an article out of a clinical neurology book stated that OBPI can be caused "when the head and neck are forced downward by normal contractions while the shoulder is caught in the pelvis". So, who's to say what happened. Since she was a shoulder dystocia birth it is likely that my contractions could have been a factor in the injury. Nothing we can do about that. I felt a little bad after reading that that I have put so much blame on my OB.

Anyone have experience with the muscle transfer surgery?

[admin]

I am glad that things are progressing for your child. I just want to say get some second opinions. I was told by my neurologists -do nothing- everything will be fine- but there were some things I wish I had known about that could have helped us at certain stages in his life that had I gone to other experts I would have had more information to base my decision on. Continue over the years to have your child checked by different specialists to get a broad perspective. There are different issues that crop up over time and you don't want to miss opportunities to have treatments that can prevent further problems. All the best to you and your little one but always keep a close watch on this.

[Francine_Litz]

there are engineering studies (Dr. Robert Allen) that show how much force is necessary to injure a nerve - you can read all about this at www.shoulderdystocia.com. it takes 30-100 pounds of pressure to injure a nerve..

We leared at the UBPN camp - in Dr. O'leary's presentation and also in the attorney presentations tht there is no way that a woman's labor can cause a bpi... the movies that they showed us rendered the contraction cause so ludicrous that it's embarrassing to know that a doctor is trying to pull the wool over juror's heads so badly.... the cause is excessive lateral traction on the baby's head while the shoulder is impacted under the pelvic bone

we also learned that the doctors have created an abundance of "junk publications" so that the lawsuits will go away... but it is truly upsetting to know that it is in a textbook!

a good bpi specialist attorney will know how to fight this

also- I tend to disagree with the comment that OBPI kids won't miss developmental milestones... take a poll of the people on here and see just how many kids have developmental delays... it's impossible not to - they don't have one or two fully functional arms and they spend so much time in therapy on it that they miss the normal learning time for other things.

about subsequent births - having one shoulder dystocia birth is in itself a risk factor for having it again.... you can read the risk factors on here (in the awareness section) on my site http://www.injurednewborn.com or at http://www.shoulderdystocia.com. Shoulder dystocia can occur without having any risk factors. Whether or not a child has a bpi is based on the expertise of the doctor. Can the doctor deal with a dystocia? Is he expert at applying the maneuvers to birth a child without injury? If I were you - before you get pregnant, have an xray of your pelvis and have it measured. That way if you ever decide to get pregnant again - you'll have those measurements and you can do ultrasounds at the end and compare the shoulder structure to your pelvic structure.... just a thought (don't know if it's a valid thought though - scientifically)

I don't want to sound negative but I am just concerned with the information you have been presented with. I hope that I've given you at least enough information so that you can construct a whole new set of questions to ask next time you see a doc or an attorney.

-francine

[Susie]

I also found Hentz to be a bit vague on his answers and he also seems to be pretty conservative as well as closed minded to any alternative therapy.

[solson]

Thanks for the suggestions. We arent planning a pregnancy any time soon so I will have time to find an OB that I am comfortable with and who feels confident in their ability to deliver my baby if shoulder dystocia is again a factor. I hadnt thought about having my pelvis measured. Good idea.

Susie, Hentz is vague. I really had to muster up my courage to ask so many questions this time around as he intimidates me a bit. I just feel like he doesnt have tons of time for us since Ava's case isnt "severe". I was a little disheartened by the lack of information he gave but I guess I can understand some of his hesitancy.

[admin]

Our insurance tried to make us go see Dr. Hentz 1 week before our appt. at TCH. I was told that he was the best and saw a lot of BPI patients... BPI, ok...what about Erbs Palsy? My insurance was fighting us and trying to make us cancel our TCH appt...but I didn't give in and they finally agreed to cover TCH. Afterwards, I looked up Dr. Hentz and from my research, I found out he didn't deal with nearly as many Erb's Palsy patients. If I'm not mistaken, he deals primarily as a hand specialist. I'm sure he is an Excellent Dr!! but I didn't want my insurance to pull a wool over my eyes!! We wanted to see someone that specializes and has experience in Erbs Palsy that can perform the nerve graft, not someone that would tell us he didn't need it to save insurance $$.

[orabshire]

Our insurance tried to make us go see Dr. Hentz 1 week before our appt. at TCH. I was told that he was the best and saw a lot of BPI patients... BPI, ok...what about Erbs Palsy? My insurance was fighting us and trying to make us cancel our TCH appt...but I didn't give in and they finally agreed to cover TCH. Afterwards, I looked up Dr. Hentz and from my research, I found out he didn't deal with nearly as many Erb's Palsy patients. If I'm not mistaken, he deals primarily as a hand specialist. I'm sure he is an Excellent Dr!! but I didn't want my insurance to pull a wool over my eyes!! We wanted to see someone that specializes and has experience in Erbs Palsy that can perform the nerve graft, not someone that would tell us he didn't need it to save insurance $$.

[Kristie]

Erb's Palsy is BPI... Brachial Plexus Injury refers to the whole plexus w/o being specific... Erb's Palsy refers to one section of the plexus (can't recall which but I am sure someone will chime in here) and is the most common type of injury. There are other names that are used to refer to this injury.. Klump's Palsy is another one that is specific to where the injury has occured. One more that I have come acrossed is Brachial Plexus Palsy. I most commonly use the term with injury because to me the ones with the Palsy name in it makes it sound like a condition that kids just happended to be born with.

There are several BPI docs that are primarily hand specialists and are BPI specialists. I personally know nothing of Dr. Hentz but have a few friends that have been very happy with him as their child's physician.

I am not trying to cause an argument but I just wanted to say that if you had gone to Dr. Hentz you would not have been having the wool pulled over your eyes and I think it is unlikley that he would have not recommend surgery just to save the insurance money.

What I had found is that when a doctor is orthopedic type of surgeron (vs. a neuro surgeron) they are a little less likely to recommend nerve grafting- it is not their area of specaility.

Sorry to ramble!! And I sincerly hope I didn't offend. It has not been my intent.
Blessings,
Kristie

[m&mmom]

Erb's Palsy refers to the C5&C6 nerves of the brachial plexus.

Cindy

[Francine_Litz]

the huge problem Kristie - and this is the travesty part of it as well...is that the doctors who are less apt at recommending primary surgery because it's not their specialty don't refer the child to someone who IS expert at it.... they just offer you the wait and see and don't share the rest with you.... not only is that tragic - but I think it's negligent....

(I know nothing about Hentz - so this paragraph is not specifically about him) BUT I do know of 3 other doctors who "I" visited and/or contacted with Maia at their clinics that were of that nature.

Rich - you were offended by Dr. Nath's remark about certain "so called" bpi clinics... and my statement above is why I agree with Dr. Nath... I have experienced those so called clinics who are not apt to do primary. If you don't do primary - how can you say you have a bpi clinic? A clinic should be able to handle ALL aspects of bpi not just a muscle tendon or transfer here or there. I know that one of the specialists I went to just did neurolysis but didn't know how to do nerve grafting so he'd just close them up. Actually I know a mom currently around whose daughter has avulsions and the doctor opened her up, looked around and closed her up and said "let's just wait and see". And now the mom has found a "real" bpi specialist (your Dr. Waters btw - thank God for that!)

There are huge differences between some clinics and other clinics. There are good doctors out there and bad doctors out there - in every single field. It's up to us to meet them, research their history -their intentions and do what's best for our own children. Not saying anyone is right or wrong - just saying that there is a great amount of varying experiences out there and expertise. And personally - I do believe that numbers count. The doc who has done 50 is at a totally differnt skill level than a doctor who has done 1000. I am not a doctor but I am a bodywork therapist and my treatment now as compared to what I could do 7 years ago - COMPLETELY different skill level.

I'm a real supporter of self research and multiple opinions for this very reason. You must learn everything you can about the bpi and decide what's best for your child.

just sharing my personal opinion
-francine


ps - Erb's Palsy is referred to when a specific spot on C5 becomes injured..it was Dr. Erb who figured this one out.... I have a picture of the Erb's spot on my site in the primary section where I show Maia's hand sketch from Dr. Laurent of what her problem was.
http://www.injurednewborn.com/maia/homepage.html