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
My daughter had her surgery last Friday I have had alott of trouble finding out much about this
ReplyDeleteOur situation was odd because my daughter had no sickness with hers and she's 9
Surgery went well her scare is abt an inch long recovery has been ok she's been very tired
Kelley, I would love to share my story here. It is very different, and I know would be very helpful. Where would you like to send the story and pictures?
ReplyDeleteIm 19 and never had my branchial cleft fixed, looking for some guidence. But not sure how this site works
ReplyDeleteI would also like to share our story. My son is 13 months old and was finally diagnosed with this after seeing several doctors and no answers. I was lucky enough to meet a mom via facebook who also went through this with her son. She sent the link to this blog and even though we haven't gone through surgery yet I would like to share our story and pictures, I just dont know where to send it.
ReplyDeleteHi Brenda, Thanks so much for finding us! I'd be thrilled if you'd share your story, as you know the more information from parents the easier it is for other new parents to understand this rare condition. Feel free to email me anything you'd like to share along with pictures if you have them. I'm odonnellkelly at yahoo.com. Thanks!
DeleteI am so thankful for this blog! I could not find anything regarding infants with brachial cleft cysts. My daughter is 6 months old and we are going to the ENT next week to start our journey. We believe she has a type 1. She has a pore almost on her jaw bone. I would love to share our story!
ReplyDeleteSo glad you found us! Good luck on your appointments and if you'd like please keep us updated with your results!
DeleteHello. My daughter was born with a dimple under her ear. It got infected. In proces of healing. Where can I find your story. Thank you
DeleteJust updating, we were sent to Children's Hospital in Birmingham, AL (we live in lower alabama) at the end of August and they decided to remove it. We had surgery last Tuesday. Everything went great! I was going to post pictures, but not sure how.
ReplyDeleteHi Kelly. Thank you so much for the posts, it must feel great helping people with children suffering from this very rare birth defect. At birth our daughter was diagnosed with Branchial Cleft. She's a twin so we had concerns about her sister but as they are not identical she's in the clear. Around 6 months she's was diagnosed with Third Branchial cleft and at 17months she had surgery. 1 week on and she is a little trooper but we have had complications of infection to both incisions. This is common with surgery in the UK and she just got unlucky. Once the medicines kicks in hopefully she will be back on the mend. I'm unsure how the scars will look as she has two incisions and they have used glue stitches as given the location of them they wouldn't use anything else. One thing I will say which has been my biggest challenging during this experience, is finding a doctor who understands and knows what he is going. I think for 3rd branchial it's very rare maybe less than 2% we was passed from specialist to specialist until we was placed with someone who knew what he doing. One doctor even said she didn't need surgery! We didn't want to take the risks of waiting to see what happens which is why we had surgery. Also her neck constantly leaked fluid and about 3 months before the surgery it started to get infected. We do feel as parents we have been the right choice for her x it's such a shame there is not much more information about this condition x
ReplyDeleteHi I'm from the northwest UK. My just turned 1yr old has been diagnosed as right brachial cleft fistula or the 3rd or possible 4th arch not certain until has mri. I know this is extremely rare more so for the 4th. How do you go about choosing the right surgeon when it's an infant. I want to find the specialist in this field but don't know how to go about it. Can anyone please help. I don't really know anything about the condition other than my little girl was getting frequent infections in her neck and very poorly and distressed when she had the infection. Tiny legion noticed on right side of neck so I pressed the doctor for a diagose ad was getting fobbed off
DeleteGlad to have found this blog. My two week old was just diagnosed with this after what looked like a pimple showed up on his neck and became very infected fast. From what I understand, his presentation of being infected at first site is unusual. So, I'm looking for answers. I'm so glad to find you because we are in the metro Detroit area. I'm going to try to get in at U of M. Currently, we are seeing a doctor at St. John Medical Center that our pediatrician recommended. Let me know if you'd be open to answering some questions. Thanks! Laurie
ReplyDeleteKiera's Story. My 17 year old daughter is about to undertake a journey in UK of having her Branchial Fistula/Cleft removed after a series of repeat infections and numerous courses of antibiotics. First ENT appointment next week, but have found a specialist in London that I want her referred to. Will let you know how we get on.
ReplyDeleteHi, we have just discovered that my 17 year old has a third branchial fistula'. He was born with the dimple in his neck which we mentioned to doctors and it was ignored. By age 9 it started leaking mucous on his white school shirt and he was teased at school. He started feeling very sick with terrible abdominal pains and crashed out with what the doctors thought was glandular fever but without an official diagnosis. Of course they looked at the neck and stomach as two separate things and referred him to the paediatrician. She thought he was putting on the stomach issues and told him to get back to school. We took him out of school at 14 as he was so unwell but weren't believed. He presented with a sebaceous cyst so they thought and was prescribed hydrocortisone cream which made it worse. I took him to hospital and the doctor cut into it to drain it but not much pus came out. Last year I took him back to the GP and asked what this was on his neck as we were sick of infections and antibiotics. She said she could remove it as it was an inverse hair follicle. He underwent minor surgery on it and just before I told yet another doctor that it seemed to have a channel under the skin. He ignored me, removed the follicle, it immediately formed a red raised cyst and infection. We went back to the GP and saw two GPS and a nurse in the same room same time. They gave clarithromycin and said it was a soft tissue infection. They told us to go to A&E if it got worse. It became terrible so last week we went to A&E. The doctor panicked, wanted him to go straight to surgery at 1.45am. The consultant general surgeon looked, I told him the history and immediately said branchial fistula' and sent him straight to ENT. It's sitting on the vagus nerve so has caused chronic stomach abdominal problems for years. It's ruined 8 years of his life and doctors just said he was lazy with anxiety and referred him to mental health! He has his operation next week. Now I've checked the necks of his brother and sister, and his 6 year old brother has a fourth branchial fistula' by his collarbone and SCM. My 18 month old great niece has one too. Thank you for your blog.
ReplyDeleteHi Ceri. How is your son doing now post the operation? Did it resolve his gastro symptoms? Rebecca
DeleteMy son, fatyer, and brother all have them. My son had surgery at 11 months so remove his after constant infections and discomfort. He has very minimal scars now at age 4 and going through that process def improved his life! I hope your son handles surgery well, and this improves his life as well!
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ReplyDeleteHi! How do I download this guide?
ReplyDeleteHello
ReplyDeleteI really appreciate everyone sharing their stories. I am a 52 year old women who just diagnosed myself because my doctors over the years had no idea what my condition was. I would experience small amonts of fluid leaking from my neck, mostly during exertions but it never caused any pain or problems. I also had a skin tag appear just over the clavicle 30 years ago but again my doctors just blew it off. I finally did some online research and found others experiencing this issue with their young children. The drainage from my neck appears to be increasing and is thick mucus hut but clear. I am happy to say that I have a CT scheduled next week. I hope there is an invasive surgery that correct my issue. Does anyone here know if CT or MRI or Ultrasound is correct to diagnose this condition?
I’ve had 2 daughters have surgery to remove brachial cleft fistula’s. They are actually identical triplets. One had surgery at 8 months old at Boston Children’s hospital in 2013. Hers was actively draining and she had a brachial dimple. She ended up having a big tract (longer than pen) Removed. Her sister just had surgery 2 weeks ago at 7 years old. Hers just started draining and she ended up having a tiny tract removed and a small cyst within the tract. The third triplet still has no signs of having it.
ReplyDelete