Tuesday, March 13

Back to the Drawing Board

What made us start questioning our decision to go to Cincinnati? We thought we had everything figured out. We have agreed to be a part of the research project Dr. Choo is doing at Cincinnati Children's. We have had all of Drew's diagnostic testing conducted in Cincinnati. Why the sudden change of heart, you may ask. We have begun to worry about the aggressiveness of the program in Cincinnati.

I went to a parent support group meeting a couple of weeks ago and was asked to talk about the things going on in Drew's world. I could think of nothing to say. Sure we put hearing aids in each day and do the activities we have been given through our early intervention program, but basically, we are doing nothing. We are enjoying our beautiful, fat, profoundly deaf baby boy. And while we cherish these precious moments, each day that passes is one more day that he can not hear. Why are we sitting around waiting to have an MRI and gain insurance approval for his surgery? Why can't Drew be implanted tomorrow? Why do we have to wait? And why have I not questioned this time frame issue more? As I pondered these questions, I asked myself, "Are we are being as aggressive with Drew's implants as we need to be?" I got home from the parent support group meeting and Drew's Dad and I questioned ourselves the rest of the day. The rest of the weekend. And we are still questioning ourselves today.

Drew's Dad and I have been very aggressive about everything regarding Drew's profound hearing loss from the beginning. (Are you surprised?) We have spent countless hours researching everything on profound hearing loss, cochlear implants and oral deaf education. We have traveled out of state for testing and visits to the top oral deaf education schools in the country. And through it all, we have learned that there is no one way to proceed forward. Cochlear Implant technology is evolving daily. There is no set course of action. The standard protocol changes from one implant center to another. Throughout all of this, one thing has remained constant: we need to utilize the best medical intervention available today.

In all of our research, we are certain that having Drew simultaneously implanted is by far the best choice. We also believe that having him implanted as early as possible will only further help him perform optimally with his implants. I contacted Dr. Choo about two weeks ago with our research and desire to have Drew implanted simultaneously. I could tell instantly that he was not comfortable with performing the surgery simultaneously by the long pause following my request. I do not want to push him into doing surgery on my son if he is not comfortable with this new, very aggressive procedure. While Dr. Choo is an excellent, excellent surgeon, he is not as aggressive as we would like in this field. His argument is that we need to see how Drew does with his first implant, and assuming he performs well, Dr. Choo will do a second implant between six months and one year after the first. Because we know Drew's hearing loss was caused by Connexin-26, we are certain that Drew will perform optimally with his implants, since hearing loss is the only trait associated with this genetic disorder. So waiting to have the second implant done in Connexin-26 children is only putting them through another, unnecessary surgical procedure.

In addition, I questioned the time frame that Dr. Choo would like to have Drew implanted. Why are we waiting to implant a child with profound hearing loss that is showing no benefit from his hearing aids? I do not see the need to wait until he is one year old. When I asked Dr. Choo about this, he again he not as aggressive as we would like. He sticks to the 11 month to one year time frame, as approved by the FDA, because there are some risks of additional bleeding with the softer skulls in infants. These risks are minimal and in our minds do not outweigh the need to get Drew hearing as soon as possible.

So we have questioned our decision to go to Cincinnati. And we have questioned why we are questioning ourselves. Just when we think we have made some difficult decisions, we go back to the drawing board and ask, have we made the best decisions for Drew? In this case the answer is "No." So we open doors we have previously closed, and in doing so, we have realized that we may have closed some doors prematurely.

1 comment:

Anonymous said...

Ah, it's mind numbing isn't it? I have to hand it to you, you're really really on top of your game and doing a kick butt job advocating for your son.

We didn't have Dr. Choo, we had Dr. Arjmand, the most conservative of the surgeons in Cincinnati. We love him and feel his approach for our son has been perfect, but we are dealing with much more than hearing loss.

What I can say without a doubt that has been absolutely spectacular about Cincinnati, is that they have a team approach to the care. This may not matter as much to a child who only has a hearing loss, but for our child who has developmental delays and G.I. issues to contend with, it has been ideal. Last week, we saw Dr. Arjmand about one hour after seeing Dr. Wiley. She had emailed him her report on our visit and he had read it. He was able to take that information into consideration for his visit with Ethan. Then, to top it off, when we went to see Marcy in scheduling, she had also received email from Dr. Wiley and knew exactly what we needed and had begun working on it.

You'll make the best decision because that is just what you do. Don't second guess yourselves too much, you're doing such a fabulous job and he's such a lucky boy!