Final Decisions

We wanted to write and give you all an update following our second meeting with the Pediatric Neurosurgeon in Buffalo yesterday. As you know, we were given two completely different diagnoses from the surgeon in Buffalo and the one in Rochester. However, the Buffalo Dr. had not yet seen the most definitive test of Sy's brain. So, our prayer was that yesterday he would change his diagnosis based on the evidence made clear (even to us) in the Head CT and we would have final confirmation and could move forward with the procedure. That, however, was not the case.

The doctor in Rochester diagnoses Silas as having the suture in the top of his head (Sagittal suture) as being open and the two in the back (Lambdoid Sutures) as being closed. The doctor in Buffalo yesterday said the the CT confirmed his earlier diagnosis in that he felt the Sagittal suture was closed and the two lambdoids were open. Clearly these are completely contradictory and require two different courses of action.

The doctor in Buffalo, Dr. Rozzelle, trained under a Craniofacial surgeon by the name of Dr. Fearon, who is currently the best in the world. Dr. Rozzelle said that it is highly unlikely that the Rochester doctor's diagnosis was accurate, as the lambdoid sutures rarely, if ever close and that Rochester was suggesting a procedure much more invasive than that which Silas would ever need. We decided in the end to go with the Buffalo doctor and chose the less invasive, endoscopic surgery on his recommendation. Although not completely at peace, we felt it was "the lesser of three evils".

Fast forward 2 hours. We got a phone call from Dr. Fearon, the Craniofacial Surgeon in Dallas. We had overnighted Sy's test results and a ton of pictures to him. Who knew we would be blessed with the opportunity to speak with him directly regarding Silas and his care? He explained that the surgery recommended to us in Rochester had first been used by a Polish doctor in 1965 and since had been abandoned. The surgery recommended to us in Buffalo in a side by side comparison to major reconstructive surgery had worse long term outcomes and resulted in more deaths. He also disagreed with both diagnoses and wanted to offer his own, third opinion. Just what we were hoping for!

Dr. Fearon, who sees more cases of craniosynestosis than anyone in the world, believes that Silas has Mercedes Benz craniosynestosis (it looks like the Mercedes Benz emblem).

The straight line in the picture is like the suture in the top of the head. It connects to two sutures in the back of the head that make an upside down V. Again, rarely if ever do all three of these fuse shut. There has, to this point, been one study published on this medical condition that included the three known patients with the same diagnosis. Next month, Dr. Fearon will publish a report detailing the 10 patients that he has now seen. That makes Silas lucky number 14 reported in the world. We always knew our son was one in a million. Last night we found out he is actually 1 in 473 Million!

So, where do we go from here? Dallas, actually. Silas will need to have open vault reconstructive surgery, whereby Dr. Fearon will split his skull, remove the bones, reform each of the bones in his skull and then reinsert them into his head. There are obvious risks. However, in the doctor's own words..."I am fixated on safety. Most doctors you see are pretty average. I like to think I have pretty good judgement. I know I have the most experience." To date he has performed 780 surgeries and has only lost one patient who had numerous other very significant medical issues. Out of all of Dallas he will only allow 5 neurosurgeons and 3 anaesthesiologists to work with him, feeling that more experience equals fewer mistakes. Following the surgery Silas will be monitored closely for years, as he has a 66 percent chance of developing a chiari malformation (the back of his brain pushing into the base of the skull causing a cork effect in the top of the spinal cord). However, long term, the patients have developed well both physically and developmentally.

Our prayer now is that our insurance company will approve this (although we have made our decision regardless), that we will know for sure the best time to go ahead with the surgery, that the surgery goes smoothly and that Silas does not develop Chiari, requiring a second surgery.

The blessing in all of this is that J.L. and I can say for sure that we are at peace. We know that God has worked all things together to bring our family to this point. We have been blessed in that we found this in time. We have found a wonderful doctor who cares about our son, who said that he will treat him not as just another case, but as if he were caring for his own child, and who also happens to be the best in the world. Although a long and difficult road ahead, we have the data to support there being a positive outcome in the end. We have family, friends and people we have never even met who have upheld us in prayer each and every day. And we have the assurance that God is with us even in the valley.

Isn't it amazing what God puts into your life at the most opportune moments. We just read the following and now know it fully and completely as truth:

"The name Lord...is anything but empty of meaning. It specifies immediacy, a presence: the verb "to be," which in Mosaic context is a "being present." ... Do you see the beauty here? It's unbelievable. The defining attribute, the identity of God, is "present rescuer." His name holds for us the very promise of presence. It is who He is. He is here. He is in the middle of the stuff we are in the middle of...This is a name that sticks. This is a name that defines. This is a name that in its very utterance births life. Our God is present. He comes to set things right. In His very name is rescue. This is who He is. There is not a moment in human history that has eluded His gaze. There is not a second in your life that He was not around. He is unavoidable. He is inescapable. He is inevitable and undeniable. He is."

Praise Habit: David Crowder