Emails....

I get emails and messages from parents all over the world who have children with similar conditions to my child. I love getting these messages, it is always nice to know you are not alone. Here is one example of a message I got and my response. I changed some of the info on the oringinal message to protect the other mom's privacy.


Hi, We don't know each other but I saw your son on the Ectrodactyly page on Facebook. My son was born with his leg almost the same as your sons. I was wondering if there's any advice you could give me since your currently going though the same thing I am? Thanks so much!!


My Response:

Hi! Thanks so much for writing me. It always helps to know that you are not alone in this situation. We are still waiting to have our baby's surgery, the first time we attempted it, it was canceled because he was wheezing at the pre-op appointment (he has asthma and he is prone to respiratory infections). But its amazing how mobile he is, even with his legs the way they are. He climbs on everything, he can even go up and down stairs! :-)

The best advice I can give you now is to shop around for your orthopedic surgeon. Don't be afraid to get a second opinion and even a third or forth opinion. Don't take their surgical plans at face value. You only get one shot to do this surgery so you really want to feel confident that its the right surgical plan for your child.

The first surgeon we saw took one look at our child, threw his hands in the air and backed out of the room while saying he needed to refer us to someone else because he on really deals with fractures. The second surgeon we saw was the head of the pediatric orthopedic unit at Phoenix childrens hospital. He was rude and condescending and didn't really do a good job answering our questions. Like you, this doctor told us that the knee on my sons right leg was unsalvageable and he would have to do an above the knee amputation. He also wanted to do surgery on Brodie's left leg to fuse the tibia and fibula together as they are not connected. We didn't choose him because we didn't feel comfortable with him, but we took his surgery plan at face value and assumed that this is what any surgeon would need to do for Brodie.

When we moved to omaha shortly after that, we saw our third surgeon who was the head of pediatric orthopedics for the omaha childrens hospital. This doctor referred us to a surgeon at shriner's hospital in minnesota named Dr. Krandall. Apparently this guy is a world class specialist in amputations for children and he felt that he would be the best choice for Brodie. This doctor at Shriners had a completely different surgical plan in mind, which really surprised me. He felt that he could save the knee on Brodies right leg and do a below-the-knee amputation instead. As you probably know, going below the knee can make a huge difference in their ability to walk and move later on. This doctor also felt that doing surgery on the right leg was unnecessary (less surgery, yeah!). What's important is that this new doctor was willing to take a different approach and at least try to save some functionality in that leg. Even if they end up having to go above the knee, at least we tried, you know?

I guess my point is, you only get one shot at this surgery so don't be afraid to shop around and find the doctor you feel the most comfortable with and that you feel has the best plan for your child. You are not going to hurt your doctor's feelings by getting another opinion. It might surprise you to see how different the plans of each surgeon are. This way you will know what all of your options are before you take such an important, life-changing step for your baby. I'm glad you wrote, I hope we can stay in touch. Our children's conditions are pretty rare, so its nice to find someone out there in the world who can relate. :-)