UPDATE: Two and Half years later...

Hi readers! I have got a few comments recently and figured it might be time to post an update. I'm so thrilled you have found us (look, it's a community!) and hope our story (and others in the comments) might help you navigate your child's branchial cleft abnormality path a bit better. Here's a picture of our daughter 2.5 years after her surgery. We've had NO problems and her scars are very hard to notice (there's one horizonal one about 1 inch and a smaller one at the old opening site that's about a centimeter:

Can you see them?  Didn't think so...It's pretty hard to photograph well...

How about now?  That's the larger one in the middle of the photo and the small one is at the bottom.  I think she'll be good to go by Prom dress season!

 God bless all of you and please, continue to share your stories and let us know how your little one's journey turns out!

Four months post surgery

Her scars look quite good...yay!

We're done!

Surgery is over!  It went well, although not as ideally as branchial cleft fistulas CAN go.  Dr. Green, from U-Michigan Pediatric ENT, conducted the surgery and she was in good hands.  Here's the basics:


Our daughter's branchial cleft abnormality was a fistula tract, with one opening at the base of her neck.  Dr. Green actually SHOWED us what he excised--the tract looked like a bloody red nightcrawler worm (I actually thought it would make good fishing bait!).  About the width of a pencil around and about 7 inches laid flat.  This was connected at the top of her neck to her tonsils, so they had to come out in order to get all the cyst/fistula material out.  If it's not all removed, it's possible it can regrow.  So our little 16 month old had her tonsils removed and two large incisions on her neck.  The one at the base of her neck was 4 stitches and the one further north was 9 stitches.  These are ugly, large visible scars and we hope they will fade with time.  But as a parent reading about this surgery beforehand, it's best to prepare yourself for the Frankenstein look on your child's neck.

Her recovery was okay.  The first night we spent in the hospital so she could be observed for infections or hemotomas, and hydrated intravenously.  She went home the next day with antibiotics and Tylenol 3 (with codeine).  She hated the T3 so we switched her to regular Tylenol on day 3 and she seemed unaffected.  The first night home we woke her up to get the T3 but after that we let her sleep and she did okay. 

We are going to get the stitches out in a few days and then plan to be DONE with this ordeal!  God bless anyone who has a little one with this condition and I hope you have learned from our story!

Parental Googling--AKA, a doctor's worst nightmare

Yes, I've become "that mom"...a week has passed since we heard Kate would need open-neck surgery on her branchial cleft fistula.  Now that I have had some time to think about it, I'm flabbergasted the best treatment for this is a one-inch incision to remove a 2 cm tract.  Really?  I had to do some investigating.  I found two interesting studies, both by Texas doctors who had done a cauterization on the tract.  I'm not 100% sure either of these findings exactly parallel what Kate has, since the terminology starts to swim around on me a bit, but it seems at least worth investigating further:

 
Endoscopic cauterization of fourth branchial cleft sinus tracts.

AND:

Periform Sinus Tracts in Children

So, I did what any slightly obsessive, over-protective mother would do--I contacted both these doctors and asked them more.  Dr. Green and U-M both have my fullest confidence, and if we need to do the full surgery, they're getting our business.  I just need to know I have exhausted every non-invasive, progressive option that exists and made sure it is not a fit for Kate's particular case.  Who knows, perhaps our family will pioneer the technique of cauterizing, not surgically excising, these branchial cleft abnormalities at University of Michigan hospital!!??!