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. 

Four months post surgery

Her scars look quite good...yay!

A Branchial Cleft WHAT?

We finally met with the University of Michigan's Pediatric Ear Nose and Throat specialist who could tell us more about the procedure related to Kate's branchial cleft cyst. But of course, our story doesn't start with the ENT consultation yesterday; it began 10 months ago, on the day our baby girl Kate was born...

She was perfect in every way, but I am an overly observant (DH would say "nit-picky") mother so I continued to look her over. I noticed, during our first night at the hospital, she had a small open pore at the base of her neck. It seemed to be "leaking" and then crusting over. I thought it odd but newborn skin is notoriously "acne"-prone due to the birth hormones so I assumed it would quickly resolve. Over the next two weeks, it would occasionally leak small amounts of mucus-like material, which would crust on her shirts (pretty gross). On her two week birthday, she fell ill with a high fever and was hospitalized at University of Michigan's Mott Children's Hospital for several days. In my quest to discover the source of the fever, I mentioned to the doctor this tiny pore on her neck that seemed to still be leaking on and off. This bit of information drew immediate attention, to my everlasting surprise. The staff suspected the "open pore" might be the end of a thyroidal cyst or tumor. Okay, now you have my attention! They sent her for a neck ultrasound and discovered it was likely a branchial cleft cyst, a congential defect that wasn't causing the fever (which did go down) but WOULD continue to be a health concern and require surgery at a later date. HUH? I was flabbergasted.

Kate's "pore" was really the opening to a branchial cleft cyst running vertically up her neck. We were told it would never close on its own now that she had been born and could, if left, become infected someday and threaten her nearby carotid artery. This birth defect runs in families and is otherwise benign. And then, it hit me--*I* had the remnants of a branchial cleft cyst on MY neck! A small colorless mole on the base of neck that I had had as long as I could remember was likely a branchial cleft cyst that had closed off before my own birth. And my older daughter had an identical mark on her neck, similarly closed before birth! So at least we know which "nit-picky" mother is to blame for this condition!

Fast-forward 10 months, during which Kate's pin-hole opening on her neck continued to leak fluid occasionally. The leakage seemed worse in the days before she came down with a cold (we learned that upper respiratory onset can exacerbate branchial cleft cysts, so this makes sense). But typically, we only noticed it leaking once a week or so. However, I could only imagine our beautiful daughter as a teen, preparing for prom and worrying about pus leaking out of her neck. If for no other reason, removal of the branchial cleft cyst was going to be necessary, and I know she'll thank us later. Details of our ENT consult in the next post...