Whit's Surgery Part 1

Let me preface this by saying that this entry is for our journal...so there are probably more details than anyone else really cares to know. But I know I'll want the details for Whit someday.

Whit has had a hole in her neck since she was born. We discovered it right after we brought her home from the NICU. We thought it was odd, and noticed it often leaked a clear bodily fluid. We informed her doctors about it and were told that she would need surgery to fix it once she turned a year old. We saw an ENT who finally gave us a term for it--"Right Brachial Cleft Fistula", and were instructed to keep it clean so it didn't get infected until we could have the surgery done at Primary Children's (our local hospital again, was just not equipped for it). Apparently, brachial cleft fistulas are pretty rare. Whit's doctor was even giddy about it--saying, "You know these are rare, right? We only read about these in textbooks. Whitley is the only case in our E.N.T.I.R.E. practice." Thanks a lot, Doc...that makes me feel better!

We saw the specialist at Primary Children's on Dec. 23rd, who confirmed that it was a very rare brachial cleft fistula. He explained it as basically a tunnel that usually starts at the tonsil, voice box, or inner ear. When she was forming in the womb, a flap of tissue got folded over and never sealed up properly. That created a hole that continued to grow and form this tunnel out to her neck where it is leaking bodily fluid. Because the mouth is so dirty, there is a high risk of infection. And because Whit's leaks, that increases the risk. If the tunnel gets infected before it is removed, it makes complete removal nearly impossible....and it could come back. Infection in that area is also extremely hard to treat. So there is an urgency in having surgery once one of these are found.

The doctor also explained that he wouldn't be able to know where the tunnel leads until he's actually doing the surgery. There are no tests to tell how long the tunnel is or where it goes. And some surgeries are more difficult and have worse complications--according to where the tunnel ends up. So we would be going into it blind--with little information about how it should turn out. That was scary for me, because there were possibilities of paralysis in the shoulders or face as a result. That was pretty drastic for me. Whit has already been through so much in her life, and I hated the thought of her enduring any more.

The doctor asked us if we wanted some time to think about it before we made the decision. But Brett and I both agreed that we had known about this for a long time, and knew that surgery was pretty much inevitable. But even then, we were shocked when the surgery was scheduled for the following month, on January 25th! We knew Whit needed surgery, but THAT fast!?! We were a little (okay, a lot) shocked! They also informed us that they could have done the surgery when she was only 3 months old, we didn't need to wait until she was a year like we were told....waiting only increases the chances of it getting infected, which would cause major problems....thanks again, local doctors!