Monday, November 30, 2015

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 (*I personally email the eGuide, it's not automatic, so if you are in, say, Australia and it's 2 a.m. my time when you buy it, you might not get an email back from me with the eGuide until I wake up :)

I've been lucky enough to hear back from some of the eGuide buyers and here's what parent's just like you have to say about it: 

I just downloaded your eGuide and wanted to let you know that I greatly appreciate the resource.  My son is three years old and was just diagnosed with bilateral branchial cleft cyst and will undergo surgery on September 15th.  I would love to share his story afterward and help other parents who are going through this because the information out there is so limited.  Our family doctor didn't even know what it was and dismissed it and we didn't have it diagnosed until we switched to a pediatrician.  Anyway, I will be happy to share and thank you!  ~Genevieve

Thank you for putting together the guide, it's been very helpful.  ~Anton

Thank you very much for the email. Actually, I ordered the eGuide for my cousin who lives overseas and just had a baby boy with the condition (going to send it right now!). Thank you VERY much for sharing your story to the world and helping others who are in the same boat!! ~Gina S.

My wife and three week old son live in Melbourne, Australia.  I just wanted to say thank you for your time and resourcefulness in putting together your website on Branchial Cleft abnormalities.  I just purchased the eBook. ~Kashi T.

Our daughter is 1 week old and my wife noticed a small hole on her neck on day 4. We have seen the paediatrician and he diagnosed it as a branchial sinus. From what I can tell this is similar (if not the same thing.) We had an ultrasound today and should be seeing the paediatrician soon to confirm the extent and hopefully be referred to an ENT specialist. Very scary, and my wife isn't handling the thought of surgery very well. Your blog and eGuide gave us a better idea of what to expect, even though it's not what we were hoping. Thanks. ~Gianni 

Special Guest Post: From Down Under!

We get readers from ALL over the world on this blog, so I thought I would share an email I got recently from K., a Dad in Melbourne, Australia, who bought the eGuide in May and sent this response:

Hi Kelly,

My wife and three week old son live in Melbourne, Australia.  I just wanted to say thank you for your time and resourcefulness in putting together your website on Branchial Cleft abnormalities.  I just purchased the eBook.

We noticed a small pore on our baby boy’s neck shortly after birth, and just today we had my internet self-diagnosis confirmed by the paediatrician (who had only seen it once before).  Your website, and particularly the picture you recently posted (which is identical to my son’s), was helpful in making me seek medical attention.  Obviously few general medical practitioners have seen this before.  We’re very fortunate to have one of the world’s best children’s hospitals here, and we’ll be taking him to see a paediatric ENT specialist soon.  Being the paranoid person I am, I’m also getting a renal ultrasound done, because the little guy also has a small ear tag (which is quite common in newborns, but can be associated with the Branchial Cleft Sinus and also kidney issues).  Thankfully, in all other areas, he is a very healthy young man, putting on weight like a machine.

Obviously, like you, I was pretty freaked out by this, mainly because of just how incredibly rare a condition it is.  It is comforting to know that, while the surgery will no doubt be a very nerve racking process, it is not a life threatening condition.  Thankfully my wife is a much less anxious person than me, and is not too worried.

I look forward to reading your ebook, and when we do finally get through all this, I will let you know the details of our specialists to add to your database to help others.  I am sure at some point in the future, someone else from Australia will contact you like I have.
I envy you for having put this all behind you!

All the best,

And just today, I got a the "rest" of their story with a link to their Australian specialist:

Hi Kelly,

Thanks again for your website and information presented with a personal touch.

We are yet to send our little man through surgery, as we felt it was best to wait until he was over 1.  We also decided to seek a second opinion, because the initial surgeon we were referred was a general surgeon and not an ENT specialist, and while he did perform 3-4 branchial cleft sinus/fistula excisions a year, we wanted to talk to an ENT expert.

She was very knowledgeable, and performs approximately 6 procedures like this per year.  She also, surprisingly, said that our son's was more likely a 3rd or 4thbranchial cleft fistula based on its position on his neck, but that we wouldn’t know for sure until the surgery.  We are going to do a couple of ultrasounds to see if that helps determine which type it is.  According to the doctor, the treatment of choice is now endoscopic cauterisation from inside the throat for 3rd/4th types (but not for 1st/2nd).  This effectively prevents infection.  Is this consistent with your understanding?

I did some reading and did find a few scholarly articles to support this idea:

I guess we will wait and see what the ultrasound suggests, and whether or not there is an opening in his throat (which means it definitely is a 3rd/4th).  If there isn’t, we’ll have no choice but to do the full excision anyway.   My wife and I are obviously very anxious, but if we can do something less invasive that will prevent infection, then I think that’s an acceptable outcome.
Thanks again.  Your suggested questions were very helpful to my wife when she saw the doctor yesterday.


Monday, April 28, 2014

Special Guest Mom Post: Ahlea's Story

I'm excited to share another mom's branchial cleft fistula story here on the Branchial Cleft Abnormalities blog.  Thanks Ahlea, and remember to check back in with us in December to report how the removal surgery went!!

I'm trying to build up the blog with more stories/pictures of real experiences by parents.  If you would like to contribute a blog post reflecting on your child's journey, please write a short summary of your child's case, how it was resolved and which doctors/hospital you used, advice you would offer other parents and before/after/AFTER surgery pictures.  Our community of parents who visit the blog (like you did!) for education and a "real world" view of their child's condition and what to expect would thank you! 

AHLEA'S STORY: When my little girl was 2 days old I noticed a pore on her neck. I mentioned it to our pediatrician and she ordered an ultrasound. At her 2 week appointment the pedi told us she didn't see anything but she wanted to have an ENT take a look at it. 2 weeks later we met with the same ENT that put tubes in my sons ears and took out his adenoids. She is the one that diagnosed my daughter with a branchial cleft fistula. She gave a very vague description of what it was then mentioned removal. Honestly, the moment she said the word surgery I went blank. I don't remember one word she said after that. 

We live in a small town and our hospital is a small county hospital that isn't very advanced. I loved the ENT there but had no idea what was going on with my girl. She gave me a referral to an ENT in Champaign, IL at a bigger hospital. We got a better idea of her condition. However, I wasn't comfortable with the guy we met. He told us he would want to remove it within 3-4 years but by 10 at the latest. This was the day I turned to Google. I still didn't completely understand her diagnosis but definitely should not have tried to get more information on my own. And that Images button! Oh don't even consider it! When she was 3 months old she got RSV and there was green goo coming out of her neck. They didn't seem concerned but it freaked me out. 

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 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!

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!