VERY CONFUSED on where to go/ who to see

[Karen Hillyer]

Hello Guest
I live in the UK and so have no experience of any of the surgeons or facilities being discussed on this thread, but I do have a son with a robpi and would like to offer some advice/insight for you.
You are about to embark on a journey without end - your concern and worries for your child will be with you for the rest of your life. - This may seem obvious but I think it's worth pointing it out!
The reason I say this is because the true answer to
your question is that there is no "right answer"
you need to choose a specialist for your baby with whom you feel comfortable, whom you trust - this relationship can be as important as the actual skill of your surgeon in repairing your childs injury.
Think about travel/accommodation/ care for other children - all these things need to be taken into account when making your decision.
Trust your instinct and remember nothing is cast in stone - one surgeon may be suitable for your child now, but you may wish to change in the future.
My son is 12 and has undergone three surgeries with three different surgeons and we have been very pleased with the results of all of his surgeries.
I wish you well in your quest and pray that your baby doesn't need surgery at all
Karen

[Francine_Litz]

The doctor that helps your child becomes your angel and no one can tell you otherwise.

People choose one doctor over another because of gut feeling (I'm talking about after the research and after the questions and all of that)

It's important to meet the doctors -ask them as many questions as possible (http://www.injurednewborn.com/maia/drquestions.html) and trust what you and your husband feel is the best route - if any - to go.

It won't be hard - it'll be easy and you'll understand it when you do the work to figure it out.

Once you find someone you trust - you'll have a sense of accomplishment and ease. You'll still be stressed about the surgery concept - but it'll be at a different level of stress.

The mom that wrote this post did not email me as I suggested. Part of me wonders if it was a mom at all.

I think we all have to remember on here that with the allowance of guest/anonymous posts there is good and bad that comes out of this. The good is that people who are too scared to post because of legal reasons have access to the message boards...but the bad part of that we don't know who is really posting. And quite often it is outsiders coming in here to rile us up so that we have "in-fighting". We have proven this before when UBPN showed the IP numbers and we saw that some inflammatory posts came from someone specific.

The minute a post arrives we ALL know if it will cause a fire or not. Let's be honest. We can all work at shifting some of these known fire starters into calm by answering privately.

Karen said it best: there is no right answer to your question

every single person on earth runs on a different battery, on a different thought process and with a different agenda and priority

we're not meant to think alike - how boring would that be

[admin]

I don't understand why this type of post would cause a fight. Getting ideas on different doctors and facilities is great to help a new mom get ideas. Obviously, she will not read one post and say, "Oh, this doctor sounds great, I think I will go to him." Instead, she can read all of the different experiences we have with each doctor. Although we chose DR Waters, I would never say that someone who goes to a different doctor made the wrong decision. It is crazy for people to put down other doctors just b/c it simply was not their choice for ther injured child. Every doctor and every parent have different personalities and different tastes in what they believe suits their child best. In my case, yes, Dr Waters is the best, but the best for Ella, not everyone elses child. We all have to understand that people WILL NEVER all go to the same doctor. It just wouldn't happen and it wouldn't make sense in our world. Variety is better and variety is how it will always be. We as parents narrow it down to our personal preference. We cannot speak for anyone else or their child's treatment. We all have decisions to make and we all "have been there" in looking for the right doctor. Why not give eachother a smile and say, "We are lucky to have surgeons who know how to fix our babies." Never mind which one we chose to do the work.
~Krista~

[JessicasMom]

First, let me start by saying that I did not see anything offensive about any of the posts on this question, but just as people post their positive experiences with a certain doctor, I can't see the harm in posting their negative experiences as well. As a parent, I personally would like to be knowledgeable about the good and bad things to watch out for with a certain doctor. I'd like to hear both sides and, with that knowledge, make my own decisions. I think too much information about doctors is private and should be public. I'd like to see a public database on a doctor so that you could check their history before becoming their patient. I wish this kind of system was in place so that someone could check and see if their OB/GYN had injured other babies or to see how many fatalities due to physician error a certain surgeon has on their record. I would like to be able to tell another pregnant mother who says that she will be going to my OB/GYN exactly (factually) what happened to my daughter. BTW, our lawyer said that legally I CAN do that as long as I am factual about what happened (there was shoulder dystocia, the doctor did not do any manuevers to relieve the SD, and my daughter has a brachial plexus injury).

My husband is a sales rep. for Neuro and Spine surgeons and he spends most of his time in the O.R. with these surgeons. I can not tell you what kind of insight we have gained into how surgeons think as a result of this. Surgeries are a surgeon's business and are often thought about as business decison.

With our children (and ourselves), I think we need all the information we can get (postiive and negative) about the health care professionals that we are entrusting with our children's (and our own) care. I particularly think this kind of sharing of information is even more important in a community where our children HAVE an injury because of a physician's error. If there are public forums where people can express their positive and negative reviews of products, certainly there should be public forums where we can express opinions and experiences with much more important matters- like the professionals we are entrusting our children's lives to.

Just my opinion!
 

 
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[Francine_Litz]

krista - there's the other side of what should a mom do if she really has a terrible experience with a doctor and she wants to share this - do you think that's really possible in this forum? it's not to change the wonderful experience that others have with this doctor - but to inform that bad experiences are possible as well. How does REAL information get shared in a public forum without everyone getting freaked? It's impossible truly and that's why certain things should be shared privately.

[admin]

I too am thankful for the positive and negative experiences that people can share. We are here to learn from eachother.

[njbirk]

I understand what you all are saying but you cannot see the posts that have been deleted. The ones that remain do not violate our message board policy and as you can see we do allow both negative and positive messages.

It is when a post goes over the line and becomes an attack that they are in violation.

I don't want to dwell on this -- I just wanted to explain a bit more for those of you who may not have realized that some posts were missing.

Now back to the original intent of this thread I hope ...

Nancy

[JessicasMom]

I didn't see the missing posts. Were they pretty inflammatory or was it just that the view that was presented was from a negative experience? I would hope that a post would not be removed unless it was slanderous and not just an opposing point of view.

[njbirk]

I probably should have posted the link to the policy which we usually try to do as there are always new people on the boards who may not be familiar with it. Sorry I forgot. Basically, posts are removed if they violate the message board policy. That policy can be found here:

http://ubpn.org/ubpnweb.nsf/web/boardsinfo.html

Nancy

[cbe411]

To whom ever started this thread.....
I think that this is a very goog question but again as others have stated it really is a personal decision on what is best for the child/person, there is no right or wrong! I personally am TBPI and I have three different doctors, two of them are surgeons, in different states even! What is best for one is not best for others so PLEASE keep that in mind!

As far as being able to post as a guest I really feel is a good thing, some people just arent confortable enough to say who they are, not that we personally know them, but they have their reasons and this we should respect. I dont think that anyone really should "bad mouth" any doctor to anyone! If you had a bad experiece, share just htat you had one, not with who and going into detail. There are some people on these boards who think very highly of their doctor and look down on others for who they ahve chosen! THAT IS NOT RIGHT! We have to chose for ourselves and as many have said, "There are no right or wrong doctors" Please keep this in mind!

Courtney