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.