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 Mom Post: Stephanie S. from Nebraska

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.