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!
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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.
A few weeks later I met with our pediatrician. I explained I wanted to go to someone at a children's hospital. Most kids get their first infection by 5 and he wants to remove it way before then. He suggested close to her first birthday. If she gets an infection, it is a very tiring process to get rid of it. The surgery cannot be done until the infection is gone. He said that the surgery could last anywhere from 20 minutes to 3 hours. There will be 2 horizontal scars that will blend with the natural lines in her neck as she gets older. We will stay overnight at least. If they have to take the tonsils out we will most likely be there longer. We wouldn't be able to leave until she showed she could swallow. He said younger kids tend to refuse to swallow and end up needing an IV, leading to a longer stay. After doing a lot of talking with my husband and our insurance we decided to schedule the surgery for Dec. 3rd. It's just a few weeks after her first birthday.
The picture above was taken this week. She is 5 months old. It's really hard to get a picture because it's on a crease on her neck and she's been blessed with lots of extra neck rolls :) Here's to hoping for a simple procedure and quick recovery! I'll try to remember to update you as we go through this. Sorry it ended up being so long. I just wanted to give as many details as I could.
My 6 month old daughter has exactly the same thing! We go to the doc on mon for her checkup and shots so I will definitely be bringing this up. Possible surgery in the future is very scary but I guess we will see what happens. My daughter has always been stuffed up. I always blamed it on allergies and the wonderful cold winter weather of South Dakota. Now I wonder if the stuffiness is somehow related to this. Has anyone else noticed a stuffy baby/child with this?
ReplyDeleteAfter a visit with her primary doctor we will be seeing a Pediatric ENT on the 20th. Her primary didn't know what it was, I had to tell her. Of course I'm not 100% positive but I am pretty sure. She did tell me good job mom for researching it!
ReplyDeleteMy Carol will also have to have surgery to get this removed. It is a branchial cleft fistula. We go back to the ENT doc in January to set up the surgery. He also wanted to wait until she was 1 (which she turns 1 on December 2nd).
ReplyDeleteMy story is just the same as yours.. Literally leaving our check up & heading back to Naples fl. Follow up with ENT pediatric told me when she turns one it will have to be removed. -thank you so much for your story it's made me feel some what better about this. :( I'm still scared for my daughter though, she's only 5 months right now.
ReplyDeleteI'm so glad I found this! I have a one year old daughter who probably has a branchial cleft cyst. She was born with a "dimple"on the right side of her neck. I assumed her pediatricians saw it as it is very obvious and did not ask about it early on. I figured they would tell me if it was something to be concerned about. They did not see it. Now, at a year, she is having the hardest time transitioning to solid foods. She chokes on anything of more consistancy than a puree. She chews on the food for at least five minutes and attempts to swallow with no luck several times. I've had to do the Heimlick 5 times in the last two months when very small pieces of food have gotten stuck in her airway. I have since stopped feeding her non-pureed food. I'm convinced it's related to her cyst. We live in a very rural area and are traveling four hours to see a pediatric ENT next month. Hopefully, they will have answers.
ReplyDeleteHi! My son is having surgery for this in the new year I also found he chokes a lot and have a hard time with solids. He is 1 now did you have the surgery how's your little one?
DeleteHello all, I am 29 years old and at the age of 4 I had the surgery to remove a branchial cleft cyst that was behind my left ear. I am now reading that there are less invasive procedures than what I had gone through. The cyst I had was actually right next to the nerve that controlled the entire left side of my face & if they would have hit it, I would be paralyzed on the left side. I was in surgery for over 4 hours and they had used a brand new (at that time) machine that actually beeped or had an alarm sound if they were too close to my nerve. I was in the hospital for almost a month so the doctors could keep a close eye on where I had the surgery at. But I just wanted to let you all know that 25 years later & still no complications. The cyst never reappeared and I have absolutely no more pain on my left side & nothing has changed (i.e. hearing or anything for that matter).
ReplyDeleteALSO: Since I was the first child they had used this specific machine on (Saint Christopher's Hospital in Philadelphia, PA, USA) I was actually on the local news station and they wrote an entire article in the hospital's newsletter about the entire surgery and post surgery process. I am however having a hard time trying to locate any information about the actual machine online and I have been wondering for years what the actual name of it was. If there is anyone that may be able to help assist me, that would be amazing :) I believe they had referred to it as being something similar to a "watchdog" type of thing..
ReplyDeleteHi everyone my son was diagnosed with this when he was 2 weeks old it never leaked for a whole yearm now after he turned one it leaks all the time his pediatrician sent me to a surgeon to have it removed. He will be having the surgery in a few months and I am so nervous any advice would be appreciated! Surgeon seems to think it's fairly simple to get removed he said it's 45 min surgery. Cut scoop close. Lol. Thanks!
ReplyDeleteMy daughter just had the surgery today, at age 3.5, following recommendations to wait until anesthesia was less risky and before she went to school formally. My daughter had an opening as pictured above.
ReplyDeleteI will need to admit first, that my wife is a physician herself (ophthomology) and we live in the Baltimore area. This means we had access to knowledgeable parental judgement calls specifically for my daughter, and she was able to see a pediatric focused ENT at Hopkins.
Now, my wife also had one, without an opening and it ended up becoming infected around age 19. She had to undergo a speedie surgery. She did not get the right level of care at the time, because she was essentially premed, and one of the non-ENT surgeons she knew offered to do the it without charge. Because of the inflammation, they ended up getting too close to a nerve and she couldn’t feel her tongue for a month, although nothing returned.
The moral of the story is, in my opinion, to get it taken care of young, or else your child may have to deal with it with worse scarring later in life. Take the advise of a good, and not underworked ENT (so they won’t be trigger happy). Second, my daughter has larger tonsils, so there was a concern that she could have sleep apnea, and that the tonsils should come out too. She was recommended to do a sleep study, and even after watching many prep YouTube videos with my daughter, the sleep study was an amazing tramatic evening for my daughter. This was a couple weeks before the surgery, so going in, she was freaked out and it made the mental trauma of surgery even worse. So take good advice, and be warned that a sleep study is likely to make the before/after of the surgery worse.
I have a pic of the surgery in progress, and am willing to share more if it helps anyone else.
Hi Don, Thanks so much for sharing! Pictures would be great, they help parents picture what we're talking about here (for those of us who are not doctors :) Please email me at odonnellkelly @ yahoo and I'll post to help other parents. Thanks!
DeleteHi Kelly,
ReplyDeleteI am writing from Bangladesh.
Thanks for sharing this issue.
My son only 65days old.
Last week after visiting Doctor confirmed my baby has Branchail Sinus . It will not any issue in his daily life but it will not remove with out surgery. We are very much affried now.
Doctor told us the right age for surgery is after 12.
Please kindly advise us....
Nishit from Bangladesh
My daughter had this. The NICU team missed it and her pediatrician sent us to a ENT when she was 5 days old. She got 3 infections with green goop within the first 3 months of her life. She ended up being a failure to thrive baby UNTIL we had her surgery at 3 months of age. After that she gained and grew like a weed!
ReplyDelete