When we were still in the hospital after delivering our daughter, I noticed a little lump on her neck. I just thought it was something weird from delivery. At her 2 month check up I mentioned it to our pediatrician. She looked at it and said it was a cyst or clump of cells or something and wasn't anything to worry about right now. That maybe when she was older we could have it removed. So that was that. Or so it seemed.
Our daughter has also struggled with ear infections. So at her consult with the ENT to discuss tubes and arrange that, I had a thought in my head that since she is going to have to go under anesthesia, I best make sure this thing on her neck wasn't cause for concern. So I mentioned it to the ENT. After careful examination, she determined Camille had a Branchial Cleft Fistula. What on earth is that? Surgery? What? Dissect it out?! My world started spinning. We came here because of ear infections and got way more than we bargained for. She said Camille is too young to have the surgery in conjunction with her tubes and that around 1 or 2 years old, it needed to be taken care of. Surgically. I will add, it would "leak" from time to time. Not much, and until I learned what it actually was, I didn't put together that her fistula was leaking fluid and it wasn't just baby neck gunk. It has continued to leak at random.
When I left the ENTs office I started asking Dr. Google everything I could think of. Turns out Dr. Google doesn't have much information on these because they are so rare. I stumbled across Kelly's blog and want to share our story for any families out there who may be in the same boat. So consider this part 1. Coming up for us is a trip to the Mayo Clinic to meet with a specialist there. Thankfully we are only a short drive away from one of the best hospitals in the country!
**UPDATE**--July 29, 2019
I wanted to send an update on Camille.
We saw the specialist at Mayo Clinic in April. Dr. Cofer was wonderful and took all the time needed to explain everything and answer any questions. As we already knew, there is no easy or risk free way to determine the extend of the abnormality until they open her neck up and start to dissect it out. She said that full excision of the abnormality is a must and this can include a tonsillectomy and potentially even needing to remove part of the thyroid. This is all dependent upon the length and path of the tract.
Dr. Cofer said she ideally likes to wait until 3 years old. As the risk of anesthesia are less at that age. However, if she has an infection, this would require us to move up the timeline. So we need to watch it carefully.
Camille will be one next month. I am relieved we aren't needing to do anything immediately. I do also feel like it is always in the back of my mind to make sure it looks okay, watch for signs of tonsillitis or infection, and the stress and worry that comes with such a big operation.
More updates to come. I have attached a picture of what her branchial cleft abnormality looks like as a 10 month old.
**UPDATE**--April 20, 2020
Camille is now nearing one and a half. She has had tonsillitis a time or two and we have had to watch her neck very closely to ensure it has not gotten infected. Thankfully it has not. Praise God. As a mom, every time I look at her neck, I try not to think to the future and her surgery. When I do, I envision my husband and I in the waiting room while she is away from us in surgery with her neck cut open and the worry that will accompany us in that waiting room. So a big goal for me is to not focus on her neck and instead focus on her contagious smile.
Attached is a picture of the opening on her neck draining. Sometimes it gets kind of enlarged and I have been instructed to gently squeeze it to release the built up gunk.
That's my update for now. Less than 2 years until until her operation.
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