Monday, February 24, 2014

Parents eGuide to Branchial Cleft Abnormalities now available!

Finally!  It's exactly what I would have wanted when I was starting our daughter's branchial cleft fistula journey... 

If your child has been diagnosed or you suspect he or she might have this congenital defect, The Parents' eGuide to Branchial Cleft Abnormalities is a great resource that takes you step-by-step through the process, including the 12 questions you MUST ask your child's surgeon and to expect pre- and post-operation.  Click on the Buy Now link to the right to get the eGuide emailed to you!

Thursday, September 5, 2013

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:
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



Thursday, May 23, 2013

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.  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!

Wednesday, April 3, 2013

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!

Tuesday, November 2, 2010

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!

Thursday, May 27, 2010

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:
AND:


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!!??!