At some point in the child's first few months you will probably meet with an orthopaedic surgeon who will explain the various options to you ( see PFFD Treatments ). We met with several surgeons/specialists to get a variety of opinions and 100% of them have said that it is best to wait with PFFD until the child is old enough mentally to handle the concept of the surgery.
We met with several specialists and one thing that frequently happened at these meetings is that we got told about ALL of the options in treatment. That included the possibility of amputation. This can be a traumatic time to hear about something like this. One surgeon took great pains to explain that in his walk-through of all of the treatment possibilities - when he mentions amputation, it is NOT a final recommendation. After we made it through his description of amputation he went on to say that he's had parents, in the shock of the moment, after hearing the word "amputation" - get upset with him and then immediately leave on unhappy terms.
Apparently anger and disbelief are not an uncommon immediate feeling for parents to have when hearing the word "amputation." Mike - who started the first PFFDvsg - wrote about his reaction here Jennifer's story. I'm not arguing here against amputation. That may in fact be your best option. But just keep in mind that doctors like to give you ALL the options. Try not to feel pressured to make a decision at that moment.
Comments
The angry parents...
Well, after reading the above article I felt that I should tell you that it may be us (The Berg Family) who were the ones who left. The way the doctor explains it he only "mentioned" amputation. The real fact was he gave us an hour long tour of his facility, then introduced me (Chuck, the dad) to a patient in the next room who was undergoing limb lengthening. I spoke with the patient and was very excited. Then when the doctor and I returned to the room he sat my wife (Karla) and I down and said that limb lengthening was not an option for us, and we needed to discuss the "A" word. That was exactly as it was done. It wasn't an option, it was the only option he was offering to us. Also, we didn't immediately leave on unhappy terms, we were in shock, let him complete his conversation, and sadly left. So, just so everyone is on the same page this doctor was Dr. Dahl at the Minnesota Limb Lengthening Center here in our home state of Minnesota. If you would like to confirm this information you can chat directly with us by calling (763)494-8823, or email at ChuckBerg@msn.com. We just want to make sure that all the information that is presented is factual, and if the article shown above is really us, then we just want our story heard right from the horses mouth. We have heard this story has been floating around for a while, and we just wanted to set the record straight. Two sucessful lengthenings later we are glad we did more research and didn't listen to the first "expert" we came across. Thanks for your time...
Chuck Berg
The doctor didn't write this page - I did - a parent of a PFFDer
It's been about 3 years since I wrote that page and I recall that the doctor we spoke to went through what seemed like a 30 minute lead up explaining that amputation was just one of a number of options he was bringing up. After talking about it, he then went over and over again stressing the word option. I got exasperated - "OK already, I get it! Its an option!" He then gave us the explanation for why he is redundant on this point as I posted above. The point of this page is not about you or him or any specific patient or doctor. Also, its not relevant who the doctor was and I don't want this site to become a doctor grievance or adoration site. As an aside, we've met with many specialists, Dr. Dahl was one of them and we had a very positive experience and did not feel pressured to amputate. A different medical professional (not the doc above) said something to the effect of "when you offer some medical hope for their children, parents think you are the most wonderful person in the world, but if something goes wrong - they will hate you forever."
There can be a lot of emotion in parents and the feeling of shock in hearing this word and its not just you Chuck, who experienced that. I've spoken to /read stories from many parents who have said similar things about being in shock on hearing the word amputation. This page isn't about one event - it's just saying, as parents, be prepared for the amputation option to come up. When you are in shock you don't think clearly, so just be prepared. Also I'd recommend doctors who are about to mention amputation think about the shock factor for parents.
I'm glad though that you posted your story here - I think posting your reaction helps not only to prepare parents for the variety of ways that the "A" word might arise but also if a physician or medical student is reading this then they might think about what goes on in the minds of parents when they hear the word "amputation," how those words can be mis-interpreted.
I'll tell our personal story on the "A" word. We met with one physician (not any one I've mentioned in this site) who kept trying to get us to agree to let him to do something surgical (amputation, van-ness, etc). After we finally said "no thank you - we'll continue with the Mosely-type device," he, to try get us to change our mind, said in a pseudo-exasperated voice (and this is nearly an exact quote) "Well, you need to think about how your daughter is going to look walking down the aisle in a wedding dress." (Ignoring the fact that you can't see under a wedding dress, personally, I'd rather consider how well she can climb a mountain). After his ridiculous comment we brought the meeting to a close as we quickly realized that either this doctor was more interested in padding his resume/experience than the health of our child, or was one of those surgeons who promise the world no matter what the risks, or he simply could not think beyond surgery. But ultimately, a physician using high-pressure sales tactics in trying to pressure us into surgery with an argument based on wedding dresses and not on health or function, to me (and other doctors who were familiar with our case) is so shockingly unprofessional, that we elected to never take that physician's advice again.
Sorry about the confusion...
As always it seems that I understand the point i'm trying to make, but when I type it and others read it the translation gets mixed reviews.... Sorry about that. What I was trying to say is that we have heard from other parents that this was this doctor's answer for why we didn't choose him. Now that I re-read my post I see how it looked like I thought the original post was from an actual doctor. My wife keeps telling me that she needs to proof read my posts before I put them up, so from now on I promise I will have her do that...Sorry again for my silly ways of telling our story... :) Keep up the good work Rar!!!!
Chuck