Hi readers! I have got a few comments recently and figured it might be time to post an update. I'm so thrilled you have found us (look, it's a community!) and hope our story (and others in the comments) might help you navigate your child's branchial cleft abnormality path a bit better.
Here's a picture of our daughter 2.5 years after her surgery. We've had NO problems and her scars are very hard to notice (there's one horizonal one about 1 inch and a smaller one at the old opening site that's about a centimeter:
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| Can you see them? Didn't think so...It's pretty hard to photograph well... |
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How about now? That's the larger one in the middle of the photo and the small one is at the bottom. I think she'll be good to go by Prom dress season!
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God bless all of you and please, continue to share your stories and let us know how your little one's journey turns out!
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ReplyDeleteThanks for your blog - really helpful and hopeful as we just heard these words for the first time today for our 2.5 month old baby girl.
ReplyDeleteHi Thank you for putting up your 'after' photos, my child has a 1st branchial cleft cyst/looks like it is turning into a fistula and it is on the side of his face. Thank you for reminding me to not panic because it is non-fatal. It is pretty hard not to panic when you are looking at surgery for your little kid. I just want his facial nerve to be preserved.
ReplyDeleteHi, I wanted to get some advice from the group. My son was diagnosed when he was a year old. We went to 2 ENTs - one wanted to do a neck fistulogram to further diagnose exactly how far up the track went and then said surgery. The other said he would leave it alone and f/u with him each year. We've left alone since and its been 4 years (he is now 5). It comes up for me every few months were I wonder if we should have proceeded wiht the testing and surgery. In recent reading I did I came across info saying after 10 years old there is higher risk of cysts/other issues. If we are going to ultimately end up doing surgery I would have rather it been earlier than later. Did any of your docs say to leave as is or did every doc recommend surgery and as young as possible. Thanks for any input you can provide...
ReplyDeleteHi Danielle,
DeleteI would question any doctor that thinks he can diagnose where the tract goes via ultrasound or fistulogram (whatever that is). I was told the only way they could tell where the fistula ended was to take it out. Our ultrasound showed it weaving up around the neck and from there, they lose the tract. Actually I don't think ultrasounds are even necessary before surgery as long as they have diagnosed the opening as a branchial cleft anomaly. I would advise getting the tract removed sooner rather than later, as the opening required is smaller, tonsil removal recovery is easier and the scar tissue more pliable the younger they are (anytime after age 1). Consider seeking an experienced pediatric ENT (the Parent eGuide on this site details the people you should see and their qualifications to ask about!) and I suspect you'd get a different opinion on doing the removal sooner rather than waiting. Good luck!!!