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...
Hi, my name's Rachel and I'm a final year medical student. Thank you for your blog. Branchial cysts are rare and hence although they get mentioned in medical school from time to time I have never really known much about them. You've helped clarify a lot for me!
ReplyDeleteI'm 48 yrs. old and I have this. Back in the 60's, the dr. told my mother it was a clavicle cleft. My father and his sister also had the branchial cleft. Other than being a bit of a nuisance, I haven't had any trouble (no infections).
ReplyDeleteHi, my name is LaJeffery and my 7 year old daughter have it. When she was about 1 year old the pediatrician said it was nothing. She hasn't had any problems so far,but it does leak every now and again. I don't know if I should leave it alone or get surgery. She's doing fine, so I think I will leave it alone. Unless it becomes a serious problem.
ReplyDeleteHi, my name is LaJeffery and my 7 year old daughter have it. When she was about 1 year old the pediatrician said it was nothing. She hasn't had any problems so far,but it does leak every now and again. I don't know if I should leave it alone or get surgery. She's doing fine, so I think I will leave it alone. Unless it becomes a serious problem.
ReplyDeleteMy name is Katie and I have this along with ear pits. My daughter who is now 4 also has both sets of holes that i have. She has significant hearing loss. We met with specialist yesterday that advised it can also be linked to kidney problems. I am now 30 and have not had any issues with mine. However, I do, now that I am older, have hearing loss. My daughter wears hearing aids for her hearing loss. The good news is that it does not link to any brain issues.
ReplyDeleteHi my name is Leanie and I am a medical student is South Africa.
ReplyDeleteI am 24 and I have a brachial cleft cyst that opens in my lower neck. It stoped leaking any fluid for the past 10 years and after removing my tonsils in December it has now started up again, leaking as much as 15ml per day , every day! This is a clear fluid and it leaks mostly after a meal or when it’s a very warm day.
My advice to parent is to leave the cyst and not remove it with surgery, the leakage is manageable and infection are fixed with a short antibiotic course. Doing surgery will risk damage to many veins and nerves running near the area , whisch makes it difficult to remove all the cells, and this could lead to many scars being made in your child’s neck.
Especially for a girl this should be considered for her later life.
Leaving 1 cell also means re growth of cyst.
I keep my pore clean and avoid infection by never touching it with dirty hands or leaving the fluid on my neck to dry. I occasionally squeeze out the fluid and wipe it off with a clean cloth to avoid build up which causes inflammation Andy infections.
Hope this helps some worried parents out there. Everything will be fine
My son has this. His was no problem until adolescence when it started leaking a pus material, it actually would swell and drain down his neck. He had it surgically fixed at Mount Sinai Hospital in Toronto...after a few Contrast MRI's. His was performed by a Head and neck specialist and he had said that he had performed this surgery only a couple of times in the past. Once they followed the track to see where it traveled...they were able to fix it in a short surgical procedure. My son was so happy as the draining pus was causing him much embarrassment.
ReplyDelete