Decision Time

After much thought, an overwhelming amount of research, and changing our mind a time or two, we have decided to have Dr. Genecov perform a limited CVR (Cranial Vault Reconstruction) procedure on Ben.

Here is the story of how we came to our decision:

After we got home from Dallas we needed some time to process all of the information. After sleeping on it, we both agreed that we were leaning towards Dr. Fearon, mainly because Craniosynostosis is his thing- he handles around 100 cases every year. He does the full CVR procedure (a.k.a. the "big surgery") because he believes it is the most effective and safest method. Thursday night we decided that we were ready to schedule Ben's surgery with Dr. Fearon. Well... J.P. began having second thoughts late that night, and his second thoughts made me reconsider as well.

I got back on the computer (where I have educated myself thoroughly about both options) and decided to look at the personal side of things- at people's blogs. I looked at pictures of people who had done "the big surgery." Looking at these pictures is heartbreaking- babies with heads swollen to twice their normal size and eyes swollen shut. I sat here crying and told myself I would do anything in the world to not make my baby go through that. I had been doing my best to look at it as a logical medical decision, but the fact remains, this is my baby. Ben is going to have to go through this.

While we recognize we will be dealing with strong emotions for some time to come, we're determined to make the best medical decision for Ben, independent of how his surgery will affect our emotions. J.P. convinced me that if we could get comfortable with both the risks and ultimate effectiveness of Dr. Genecov's less invasive procedure, then we should reconsider that option. If we believed his method offered a high probability of success and an acceptably low level of risk, comparable to Dr. Fearon's more invasive method, then the easier recovery and smaller scar for Ben would lead us to go with Dr. Genecov.

J.P. decided to send Dr. Genecov an e-mail expressing our concerns and asked a few questions. He immediately responded and said he would call us in 45 minutes to discuss everything in depth. We were able to ask better questions because we had processed all of the initial information.

It was a great conversation. Dr. Genecov explained that for many years he used a method more like that of Dr. Fearon's, but that he has come to believe that kids with Ben's specific diagnosis can be treated just as effectively in a less invasive way.

One of our biggest concerns about the endoscopic procedure was the limited view and concern about missing internal bleeding. Dr. Genecov explained that he does not use an endoscope for this reason- he has taken the endoscopic surgery and tweaked it to be able to do it through small incisions which allow for a wider view. I would be happy to explain in further detail to anyone who is interested.

So, after some more thought we decided that the potential pros outweigh the potential cons for the limited CVR. The selling point for us is the recovery is much easier for this procedure. We are willing to risk the chance of a second surgery (approximately 5%) in order to make it less painful for Ben. Another downside to this procedure is helmet therapy, which may require weekly trips to Dallas to have it adjusted. But, as I said before, I am willing to do anything I can to make this easier on Ben.

Ben is scheduled to have surgery with Dr. Genecov on March 3, 2010. We will have a full day or pre-op appointments the day before, including meetings with our pediatric neurosurgeon, Dr. Weprin, and cranio-facial surgeon, Dr. Genecov, who will work together during Ben's surgery.

I will update once we have a better idea of our itinerary for the week of Ben's surgery. In the meantime, please keep our family in your prayers. Thank you again for all of your support.