Feeling panicked? Read this.

When I started this blog, I did it mainly because I couldn't find a single picture of what my child would look like post-open neck surgery.  Would she be scarred for life?  For a few years?  Hardly at all?  What was I subjecting my girl to by proceeding with branchial cleft extraction--in REAL terms, not a medical journal article or WebMD synopsis?  I thought if I had desperately wondered about these things, others might too.  So I did a simple parent's blog on this rare congenital disorder and hoped one or two parents (let's be honest...mostly moms :) would see my baby's pictures and feel comforted in a way I hadn't been.

Two years later, we've had over 6,000 pageviews on this site by parents all around the world.  I believe it's still the only parent site dedicated to this condition (although I would love to link to anyone else out there if you know of one!).  And while I never expected it, the reader comments I get have been touching, inspiring and rewarding on their own.  These are parents that have found comfort here after researching a suspicion, or getting the diagnosis, or preparing for surgery the next day.  Sometimes, I get one like I did today that makes me want to reach out and hug the parent that has found us:

BradnKimmySeptember 5, 2013 at 12:30 AM

Hi Kelly. I have a 3.5 month old son. He was born with a small indentation on his lower neck (docs all gave the "baby acne is normal" excuse) but it never went away. I've kept my eye on it since day 1 and noticed that if I pull the skin tight around it, it looks like a small red pimple, then if I gently squeeze the area a clear, mildly sticky fluid comes out... I haven't yet brought him to a doc about it because I finally starting doing the online research tonight and ran across your blog.

I'm so scared that this is what he has. Im only 22, just got married April 2012, had my son May 2013... I just feel like the past year has been a blur already and now THIS is a potential threat. But I would like you to know that ready through all of your posts is helping me catch my breath and stop panicking quite as much. I'm crossing my fingers that he doesn't have this, but I think it's pretty clear to me that he does... I'm really happy to see how amazingly your daughter has recovered, though!

BradnKimmy, I'm giving you and other panicked parents out there a big old virtual hug, because I know how overwhelmed you must feel.  Having a baby with a medical condition is scary and big and intense, especially when it's a weird one you have never heard of and might require them slicing into his neck.  Couple that with all the other "stuff" of life and it seems a little unfair. But  I've been married 10 years, and my oldest is now a first grader, and while I'm no expert I do know for sure that it's always something.  My oldest had pilomatricoma (see HER blog here...) and between the two girls and their surgeries I spent six nights in Mott Children's Hospital in 2011.  I thought my heart would break, I thought *I* might break, but I didn't, and we made it. And you will too. 

Advocate for your child, get him or her the best care possible and take care of yourself and your spouse in the process, but above all, take a deep breath, because this is not fatal, your child will be okay, and a branchial cleft abnormality is but a small bump in your long parenting journey.  Hugs and blessings.  xoxo ~Kelly

Yep, our Branchial Cleft surgeon Dr. Green is pretty brilliant...

Scott Hollister, left, and Dr. Glenn Green of the University of Michigan
used plastic particles and a 3-D laser printer to create the first-ever airway splint
to save the life of a baby boy who used to stop breathing nearly every day. / AP

When he's not working on rare branchial cleft abnormalities, our surgeon Dr. Glenn Green of the University of Michigan is making pediatric ENT history!  Check out this MSNBC story on him and his team creating the first-ever 3-D laser printed implantable device, in order to save the life of a little guy with a constantly collapsing trachea.  Moral of the story?  Always find a world-class surgeon to open your baby's neck.  

If you loved your branchial cleft surgeon and think he or she is world-class, tell us!  Let's share our best branchial cleft surgeon recommendations from around the country in the comments to this post and make sure every parent can find a great surgeon in their region to consult with on this rare congenital disorder!

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!