tag:blogger.com,1999:blog-52984656736388401612024-02-18T22:37:43.083-08:00Branchial Cleft Abnormalities--One Family's StoryThis is for parents, like us, of children with branchial cleft cysts, sinuses, or fistulas. When I researched my daughter's condition, I couldn't find anything written in laymen's terms which described the diagnosis and surgery on a baby or small child. Please consider this blog as one family's experience--information presented here is not guaranteed to be medically accurate or take the place of a good ENT specialist!Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-5298465673638840161.post-59795728337879874612020-04-20T10:00:00.000-07:002020-04-20T06:44:21.126-07:00Parents eGuide to Branchial Cleft Abnormalities now available!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOy5Qd4CcxkFG9mwAQFNPzggF4vP2OG_ms5QRklOJWZfmcf77a7cpSbgGVo61oCeU_ze2EU5o16rc4n5rsOFJL7UH9WNyuC7XZqoAMYOm_-36dV0WuJkqCIt3aP7DsWKhGf2wMi_bGXQ0/s1600/Brach+image.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOy5Qd4CcxkFG9mwAQFNPzggF4vP2OG_ms5QRklOJWZfmcf77a7cpSbgGVo61oCeU_ze2EU5o16rc4n5rsOFJL7UH9WNyuC7XZqoAMYOm_-36dV0WuJkqCIt3aP7DsWKhGf2wMi_bGXQ0/s1600/Brach+image.jpg" width="149" /></a></div>
<span style="font-family: inherit;">Finally! It's exactly what I would have wanted when I was starting our daughter's branchial cleft fistula journey... </span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-family: inherit;">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 :)</span><br />
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<span style="font-family: inherit;">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:<span style="font-size: x-small;"><i> </i></span></span><br />
<span style="font-family: inherit;"><br /></span>
<span style="font-size: x-small;"><span style="font-family: inherit;"><i>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! </i><i>~Genevieve</i></span></span><br />
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<span style="font-size: x-small;"><span style="font-family: inherit;"><i>Thank you for putting together the guide, it's been very helpful. ~Anton</i></span></span><br />
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<span style="font-size: x-small;"><span style="font-family: inherit;"><i><br /></i></span></span></div>
<div class="yiv2807841048gmail_default" id="yui_3_16_0_1_1408022580478_7840">
<span style="font-size: x-small;"><span style="font-family: inherit;"><i>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.</i></span></span><br />
<span style="font-size: x-small;"><span style="font-family: inherit;"><i><br /></i></span></span></div>
<div class="yiv2807841048gmail_default" id="yui_3_16_0_1_1408022580478_7840">
<span style="font-size: x-small;"><span style="font-family: inherit;"><i><span id="yui_3_16_0_1_1408022580478_7934">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.</span></i></span></span><br />
<span style="font-size: x-small;"><span style="font-family: inherit;"><i><span id="yui_3_16_0_1_1408022580478_7934"><br /></span></i></span></span></div>
<div class="yiv2807841048gmail_default" id="yui_3_16_0_1_1408022580478_7840">
<div id="yui_3_16_0_1_1408022580478_8382">
<span style="font-family: inherit;"><span style="font-size: x-small;"><i>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</i>
</span></span></div>
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Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com20tag:blogger.com,1999:blog-5298465673638840161.post-54336821539592744482020-04-15T13:29:00.000-07:002020-04-20T06:44:07.975-07:00Special Guest Mom Post: Stephanie S. from Nebraska<div style="text-align: left;">
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<span style="background-color: white; color: #1d2228; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; font-size: 13px;">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.</span><br />
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<span style="background-color: white; color: #1d2228; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; font-size: 13px;">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.</span><br />
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<span style="background-color: white; color: #1d2228; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; font-size: 13px;">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!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtsJbjvjgSWJ_EKw6vGMVLunlbq02qAO7wZP0M9-DaqZHV2opBkaTM4LUPKQ65zDtTEstz4bvQ1g_23EjGlRwo7BlU99LXmgNElvgGJst48ctE40hxeGJFd3Zb_r6CpMa_OBViejrGp3s/s1600/thumbnail.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtsJbjvjgSWJ_EKw6vGMVLunlbq02qAO7wZP0M9-DaqZHV2opBkaTM4LUPKQ65zDtTEstz4bvQ1g_23EjGlRwo7BlU99LXmgNElvgGJst48ctE40hxeGJFd3Zb_r6CpMa_OBViejrGp3s/s320/thumbnail.jpg" width="180" /></a>I wanted to send an update on Camille.</div>
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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.</div>
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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.</div>
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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.</div>
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More updates to come. I have attached a picture of what her branchial cleft abnormality looks like as a 10 month old. </div>
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<b>**UPDATE**--April 20, 2020</b></h2>
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<span style="font-weight: normal;"><span style="font-family: sans-serif; font-size: 11pt;">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.</span><span style="font-family: sans-serif; font-size: 11pt;"> </span></span></h2>
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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. </div>
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That's my update for now. Less than 2 years until until her operation. </div>
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Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com0tag:blogger.com,1999:blog-5298465673638840161.post-303514218684028052019-08-15T07:36:00.002-07:002019-08-15T07:39:29.154-07:00Special Guest Dad Post: Phillip S. from Newcastle, NSW, Australia<div dir="ltr" style="caret-color: rgb(29, 34, 40); color: #1d2228; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 13px;">
Hi Kelly,</div>
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Just a quick shoutout to say thank you for your blog on Branchial clefts. </div>
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Our son Kingsley was born in Newcastle N.S.W Australia on the 8th of May, 2013. He was a perfect, healthy baby in every way. Not long after birth we noticed a small mark on the right hand lower side of his neck. We voiced our concerns and were told by doctors it was an in mature pore. We knew something was not right as every time Kingsley swallowed the small hole would pucker and pull inwards. After many G.P. consultations, we had given up because no one knew what it was. </div>
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Fast forward 6 years...we found an awesome ENT specialist by the name of Dr. Daron Cope from Hunter ENT who finally answered all of our questions. Kingsley was officially diagnosed with a Branchial cleft believed to be a second or third. On August 8, 2019 we had it surgically excised at Hunter Valley private hospital under instruction the lesion could have negative effects later in life. It was the biggest decision of our lives as the risk of complications during surgery although unlikely would have a significant impact on Kingsley for possibly the rest of his life. The surgery lasted 2 and a half hours and it was found that a Kingsley had a complete 2nd Branchial arch fistula that extended from the lower right hand side of his neck up through his internal and external carotid arteries and terminated into his tonsils. The entire tract was thankfully removed without any nerve damage.</div>
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My partner Dannielle and I would just like to extend our thanks to the information you shared to help us in our decision making and understanding of a family's first-hand account of a relatively rare occurrence.</div>
Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com0tag:blogger.com,1999:blog-5298465673638840161.post-61777278502300687042018-05-16T08:40:00.002-07:002018-05-16T08:45:14.854-07:00Special Guest Dad Post: Don A. from Maryland (WARNING: graphic surgery photo)Don A. from Maryland wrote to share some photos of his 3 year old daughter's procedure in May of 2018. Fair warning, the first picture is from mid-surgery and could be considering graphic or triggering to some parents. I actually think it's fascinating because it's so hard for most of us to imagine there's really ANYTHING problematic lurking behind that innocent, teeny tiny hole in their neck! Thank you, Don, for sharing these incredibly personal photos.<br />
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Don writes:<br />
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<span style="background-color: #fefdfa; caret-color: rgb(51, 51, 51); font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;">My 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 in her neck.</span><br style="caret-color: rgb(51, 51, 51); font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;" /><br style="caret-color: rgb(51, 51, 51); font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;" /><span style="background-color: #fefdfa; text-align: justify;"><span style="font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: x-small;"><span style="caret-color: rgb(51, 51, 51);">I 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 Johns Hopkins.</span></span></span><br style="caret-color: rgb(51, 51, 51); font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;" /><br style="caret-color: rgb(51, 51, 51); font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;" /><span style="background-color: #fefdfa; text-align: justify;"><span style="font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: x-small;"><span style="caret-color: rgb(51, 51, 51);">Now, my wife also had a branchial cleft cyst, without an opening and it ended up becoming infected around age 19. She had to undergo a speedy 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.</span></span></span><br style="caret-color: rgb(51, 51, 51); font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;" /><br style="caret-color: rgb(51, 51, 51); font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;" /><span style="background-color: #fefdfa; caret-color: rgb(51, 51, 51); font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;">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 advice 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.</span><br style="caret-color: rgb(51, 51, 51); color: #333333; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 13px; text-align: justify;" /><span style="background-color: white; color: #26282a; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; font-size: 13px;"><br /></span>
<span style="background-color: white; color: #26282a; font-family: "helvetica neue" , "helvetica" , "arial" , sans-serif; font-size: 13px;">PHOTOS: The surgery. Bottom right is the chin, and the bottom left is her left ear. Shows a double incision. First on top to cut out the opening of the tube/cyst. The second after they went up a ways cutting it out, located in a neck fold, to continue as far up as they could. In her case they cut it off at the tonsil, and the thought was that she shouldn’t have any recurrences from there. </span><br />
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Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com0tag:blogger.com,1999:blog-5298465673638840161.post-36945236881713819122017-01-03T07:23:00.000-08:002017-02-03T07:23:17.912-08:00Link to article about cauterizationThanks to fellow branchial cleft cyst parent Lindsay, who shared this with us:<br />
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<span id="yui_3_16_0_ym19_1_1486059557304_168079" style="-webkit-padding-start: 0px; font-size: 11pt;"><i>Hi Kelly,</i></span></div>
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<span style="-webkit-padding-start: 0px; font-size: 11pt;"><i>Thanks so much for this info.</i></span></div>
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<span id="yui_3_16_0_ym19_1_1486059557304_164857" style="-webkit-padding-start: 0px; font-size: 11pt;"><i>We have been exploring options for our daughter who has a second brachial cleft cyst. We have explored open surgical methods with Children’s Hospital of Philadelphia. I also consulted with Dr. Murakami at Nationwide Children’s Hospital about the sclerotherapy option. Dr. Murakami counseled me to have a heart to heart with our surgeon to get a good picture of risk of nerve damage. After our discussion, I came across the article <a href="http://www.hopkinsmedicine.org/news/articles/less-invasive-surgery-for-branchial-cleft-fistulas" id="yui_3_16_0_ym19_1_1486059557304_164870" rel="nofollow" shape="rect" style="-webkit-padding-start: 0px; color: purple; margin: 0px; outline: none; padding: 0px;" target="_blank">http://www.hopkinsmedicine.org/news/articles/less-invasive-surgery-for-branchial-cleft-fistulas</a>and decided to schedule with Dr. Tunkel to discuss the endoscopic option he discusses in this article. Since then I read information about endoscopic removal (<a href="https://www.ncbi.nlm.nih.gov/pubmed/26466762" id="yui_3_16_0_ym19_1_1486059557304_168088" rel="nofollow" shape="rect" style="-webkit-padding-start: 0px; color: purple; margin: 0px; outline: none; padding: 0px;" target="_blank">https://www.ncbi.nlm.nih.gov/pubmed/26466762</a>) and recently realized there is a difference between endoscopic removal and endoscopic cauterization. Dr. Tunkel’s article seems to refer to the cauterization. We plan to see Dr. Tunkel in March, and after I realized his article refers to cauterization rather than removal I am wondering whether or not my daughter would be a candidate for this option.</i></span></div>
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<span style="-webkit-padding-start: 0px;"><span style="font-family: inherit; font-size: 11pt;">Anyone out there have experience with this type of surgery and its outcomes? It's what I was </span><span style="font-family: inherit;"><span style="font-size: 15px;">thinking my daughter could have when our doctor told us pretty unequivocally that cauterization was a bad idea and he wouldn't do it, let alone recommend it. Feedback, parents?</span></span></span></div>
Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com0tag:blogger.com,1999:blog-5298465673638840161.post-41706749632496910422016-03-15T11:00:00.000-07:002018-05-16T08:33:52.295-07:00Special Guest Dad Post: From Down Under!<div class="yiv0984150353MsoNormal" id="yui_3_16_0_1_1447345300143_35626" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; font-size: 13px; padding: 0px;">
<span style="font-size: 11pt;">We get readers from ALL over the world on this blog, so I thought I would share an email I got recently from K., a Dad in Melbourne, Australia, who bought the eGuide in May and sent this response:</span></div>
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<span id="yui_3_16_0_1_1447345300143_35725" style="font-size: 11pt;">Hi Kelly,</span></div>
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<span id="yui_3_16_0_1_1447345300143_35694" style="font-size: 11pt;">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.</span></div>
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<span id="yui_3_16_0_1_1447345300143_35720" style="font-size: 11pt;">We noticed a small pore on our baby boy’s neck shortly after birth, and just today we had my internet self-diagnosis confirmed by the paediatrician (who had only seen it once before). Your website, and particularly the picture you recently posted (which is identical to my son’s), was helpful in making me seek medical attention. Obviously few general medical practitioners have seen this before. We’re very fortunate to have one of the world’s best children’s hospitals here, and we’ll be taking him to see a paediatric ENT specialist soon. Being the paranoid person I am, I’m also getting a renal ultrasound done, because the little guy also has a small ear tag (which is quite common in newborns, but can be associated with the Branchial Cleft Sinus and also kidney issues). Thankfully, in all other areas, he is a very healthy young man, putting on weight like a machine.</span></div>
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<span id="yui_3_16_0_1_1447345300143_35733" style="font-size: 11pt;">Obviously, like you, I was pretty freaked out by this, mainly because of just how incredibly rare a condition it is. It is comforting to know that, while the surgery will no doubt be a very nerve racking process, it is not a life threatening condition. Thankfully my wife is a much less anxious person than me, and is not too worried.</span></div>
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<span id="yui_3_16_0_1_1447345300143_35748" style="font-size: 11pt;">I look forward to reading your ebook, and when we do finally get through all this, I will let you know the details of our specialists to add to your database to help others. I am sure at some point in the future, someone else from Australia will contact you like I have.</span></div>
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<span id="yui_3_16_0_1_1447345300143_35742" style="font-size: 11pt;">I envy you for having put this all behind you!</span></div>
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<span style="font-size: 11pt;">All the best,</span></div>
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<span style="font-size: 11pt;">K.</span></div>
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<span id="yui_3_16_0_1_1447345300143_35625" style="font-size: 11pt;">And just today, I got a the "rest" of their story with a link to their Australian specialist:</span></div>
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<span style="font-size: 11pt;">Hi Kelly,</span></div>
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<span id="yui_3_16_0_1_1447345300143_35615" style="font-size: 11pt;">Thanks again for your website and information presented with a personal touch.</span></div>
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<span id="yui_3_16_0_1_1447345300143_35621" style="font-size: 11pt;">We are yet to send our little man through surgery, as we felt it was best to wait until he was over 1. We also decided to seek a second opinion, because the initial surgeon we were referred was a general surgeon and not an ENT specialist, and while he did perform 3-4 branchial cleft sinus/fistula excisions a year, we wanted to talk to an ENT expert.</span></div>
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<span id="yui_3_16_0_1_1447345300143_35634" style="font-size: 11pt;">So we took him to see this doctor: <a href="http://entparkville.com.au/about-us/dr-sarah-morrison-2/" rel="nofollow" shape="rect" style="color: purple; margin: 0px; outline: none; padding: 0px;" target="_blank">http://entparkville.com.au/about-us/dr-sarah-morrison-2/</a></span></div>
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<div class="yiv0984150353MsoNormal" id="yui_3_16_0_1_1447345300143_35638" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; font-size: 13px; padding: 0px;">
<span id="yui_3_16_0_1_1447345300143_35637" style="font-size: 11pt;">She was very knowledgeable, and performs approximately 6 procedures like this per year. She also, surprisingly, said that our son's was more likely a 3<sup>rd</sup> or 4<sup>th</sup>branchial cleft fistula based on its position on his neck, but that we wouldn’t know for sure until the surgery. We are going to do a couple of ultrasounds to see if that helps determine which type it is. According to the doctor, the treatment of choice is now endoscopic cauterisation from inside the throat for 3<sup>rd</sup>/4<sup>th</sup> types (but not for 1<sup>st</sup>/2<sup>nd</sup>). This effectively prevents infection. Is this consistent with your understanding?</span></div>
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<span style="font-size: 11pt;">I did some reading and did find a few scholarly articles to support this idea: <a href="http://www.ncbi.nlm.nih.gov/pubmed/23128685" rel="nofollow" shape="rect" style="color: purple; margin: 0px; outline: none; padding: 0px;" target="_blank">http://www.ncbi.nlm.nih.gov/pubmed/23128685</a></span></div>
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<div class="yiv0984150353MsoNormal" id="yui_3_16_0_1_1447345300143_35663" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; font-size: 13px; padding: 0px;">
<span id="yui_3_16_0_1_1447345300143_35662" style="font-size: 11pt;">I guess we will wait and see what the ultrasound suggests, and whether or not there is an opening in his throat (which means it definitely is a 3<sup>rd</sup>/4<sup>th</sup>). If there isn’t, we’ll have no choice but to do the full excision anyway. My wife and I are obviously very anxious, but if we can do something less invasive that will prevent infection, then I think that’s an acceptable outcome.</span></div>
<div class="yiv0984150353MsoNormal" id="yui_3_16_0_1_1447345300143_35657" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; font-size: 13px; padding: 0px;">
<span id="yui_3_16_0_1_1447345300143_35661" style="font-size: 11pt;">Thanks again. Your suggested questions were very helpful to my wife when she saw the doctor yesterday.</span></div>
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<span style="font-size: 11pt;"><br clear="none" />Regards,</span></div>
<div class="yiv0984150353MsoNormal" id="yui_3_16_0_1_1447345300143_35655" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; font-size: 13px; padding: 0px;">
<span style="font-size: 11pt;">K.</span><br />
<span style="font-size: 11pt;"><br /></span>
<span style="font-size: 11pt;">AND FINALLY, the resolution to K's story, March 18, 2016: </span><br />
<span style="font-size: 11pt;"><br /></span>
<br />
<div class="yiv6589456101MsoNormal" id="yui_3_16_0_ym18_1_1458229708531_183931" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; padding: 0px;">
<span id="yui_3_16_0_ym18_1_1458229708531_183930" style="font-size: 11pt;">Hello again.</span></div>
<div class="yiv6589456101MsoNormal" id="yui_3_16_0_ym18_1_1458229708531_183929" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; padding: 0px;">
<br /></div>
<div class="yiv6589456101MsoNormal" id="yui_3_16_0_ym18_1_1458229708531_183925" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; padding: 0px;">
<span id="yui_3_16_0_ym18_1_1458229708531_183924" style="font-size: 11pt;">I’m pleased to say our son had his procedure yesterday, and all went well. I stayed in hospital with him overnight and we’re now home. Turns out it was a 2<sup>nd</sup>branchial cleft sinus, which went up into his tonsils. This meant that they did a complete excision rather than the cauterization technique I mentioned would have been possible with a 3<sup>rd</sup>/4<sup>th</sup> fistula.</span></div>
<div class="yiv6589456101MsoNormal" id="yui_3_16_0_ym18_1_1458229708531_183936" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; padding: 0px;">
<br /></div>
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<span style="font-size: 11pt;">He had a single incision on his neck, which looks very similar to the post-op photo of your daughter.</span></div>
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<div class="yiv6589456101MsoNormal" id="yui_3_16_0_ym18_1_1458229708531_183938" style="font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; padding: 0px;">
<span id="yui_3_16_0_ym18_1_1458229708531_183937" style="font-size: 11pt;">Thanks again for taking the time to create your website. It was the photo of the “pore” on your daughter’s that made me go and seek a specialist opinion for our son, so if it wasn’t for that we may not have done anything about it until he had an infection (which he thankfully never had).</span></div>
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<span id="yui_3_16_0_ym18_1_1458229708531_183939" style="font-size: 11pt;">If you get any other inquiries from Australia/Melbourne I’d be more than happy for you to pass on my email address. We’re blessed to have one of the best children’s hospitals in the world, and a public health system that makes all of this free, including my own overnight stay (parking was my biggest expense).</span></div>
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<span style="font-size: 11pt;">Thanks again.</span></div>
<span style="font-size: 11pt;"></span><br />
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<span id="yui_3_16_0_ym18_1_1458229708531_183955" style="font-size: 11pt;">K</span></div>
</div>
Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com0tag:blogger.com,1999:blog-5298465673638840161.post-84829397974766211992014-04-28T07:55:00.000-07:002014-05-01T07:58:06.276-07:00Special Guest Mom Post: Ahlea's StoryI'm excited to share another mom's branchial cleft fistula story here on the Branchial Cleft Abnormalities blog. Thanks Ahlea, and remember to check back in with us in December to report how the removal surgery went!!<br />
<br />
<span style="font-size: small;"><i>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! </i></span><br />
<span style="font-size: small;"><br /></span>
<br />
<div class="separator" style="clear: both; text-align: center;">
<span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWJuw_i15fZj1Y-Qb3m92biY8Pv7m57YKTHFHW7KDiVW85q-yhPH9bZiszM7xn2V-Gug0tsbx4ueOyF73-XgfakVaiz2ZLQs20Ep7d8v2dF6IF9HhvU1Esre_woCm8KLioxUfKcNPXzuQ/s1600/image(2).jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWJuw_i15fZj1Y-Qb3m92biY8Pv7m57YKTHFHW7KDiVW85q-yhPH9bZiszM7xn2V-Gug0tsbx4ueOyF73-XgfakVaiz2ZLQs20Ep7d8v2dF6IF9HhvU1Esre_woCm8KLioxUfKcNPXzuQ/s1600/image(2).jpeg" height="200" width="150" /></a></span></div>
<span style="font-size: small;">AHLEA'S STORY: When my little girl was 2 days old I noticed a pore on her neck. I
mentioned it to our pediatrician and she ordered an ultrasound. At her 2
week appointment the pedi told us she didn't see anything but she
wanted to have an ENT take a look at it. 2 weeks later we met with the
same ENT that put tubes in my sons ears and took out his adenoids. She
is the one that diagnosed my daughter with a branchial cleft fistula.
She gave a very vague description of what it was then mentioned removal.
Honestly, the moment she said the word surgery I went blank. I don't
remember one word she said after that. </span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">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. </span><br />
<a name='more'></a><span style="font-size: small;">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. </span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">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. </span>Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com13tag:blogger.com,1999:blog-5298465673638840161.post-14356639918621925832013-09-05T07:21:00.001-07:002013-09-05T07:21:36.265-07:00Feeling panicked? Read this.When I started this blog, I did it mainly because I couldn't find a single picture of what my child would look like post-open neck surgery. Would she be scarred for life? For a few years? Hardly at all? What was I subjecting my girl to by proceeding with branchial cleft extraction--in REAL terms, not a medical journal article or WebMD synopsis? I thought if I had desperately wondered about these things, others might too. So I did a simple parent's blog on this rare congenital disorder and hoped one or two parents (let's be honest...mostly moms :) would see my baby's pictures and feel comforted in a way I hadn't been.<br />
<br />
Two years later, we've had over 6,000 pageviews on this site by parents all around the world. I believe it's still the only parent site dedicated to this condition (although I would love to link to anyone else out there if you know of one!). And while I never expected it, the reader comments I get have been touching, inspiring and rewarding on their own. These are parents that have found comfort here after researching a suspicion, or getting the diagnosis, or preparing for surgery the next day. Sometimes, I get one like I did today that makes me want to reach out and hug the parent that has found us:<br />
<blockquote class="tr_bq">
<div class="comment-header" id="bc_0_19M" kind="m">
<span style="font-size: x-small;"><cite class="user"><a href="http://www.blogger.com/profile/09969193704715808229" rel="nofollow">BradnKimmy</a></cite><i><span class="icon user"></span><span class="datetime secondary-text"><a href="http://branchialcleft.blogspot.com/2011/02/four-months-post-surgery.html?showComment=1378366258926#c6052518845459018565" rel="nofollow">September 5, 2013 at 12:30 AM</a></span></i></span></div>
<div class="comment-content" id="bc_0_19MC">
<span style="font-size: x-small;"><i>Hi
Kelly. I have a 3.5 month old son. He was born with a small indentation
on his lower neck (docs all gave the "baby acne is normal" excuse) but
it never went away. I've kept my eye on it since day 1 and noticed that
if I pull the skin tight around it, it looks like a small red pimple,
then if I gently squeeze the area a clear, mildly sticky fluid comes
out... I haven't yet brought him to a doc about it because I finally
starting doing the online research tonight and ran across your blog.</i></span> </div>
</blockquote>
<blockquote class="tr_bq">
<div class="comment-content" id="bc_0_19MC">
<span style="font-size: x-small;"><i>I'm
so scared that this is what he has. Im only 22, just got married April
2012, had my son May 2013... I just feel like the past year has been a
blur already and now THIS is a potential threat. But I would like you to
know that ready through all of your posts is helping me catch my breath
and stop panicking quite as much. I'm crossing my fingers that he
doesn't have this, but I think it's pretty clear to me that he does...
I'm really happy to see how amazingly your daughter has recovered,
though!</i></span></div>
</blockquote>
BradnKimmy, I'm giving you and other panicked parents out there a big old virtual hug, because I know how overwhelmed you must feel. Having a baby with a medical condition is scary and big and intense, especially when it's a weird one you have never heard of and might require them slicing into his neck. Couple that with all the other "stuff" of life and it seems a little unfair. But I've been married 10 years, and my oldest is now a first grader, and while I'm no expert I do know for sure that it's <i>always</i> something. My oldest had pilomatricoma (see HER blog <a href="http://pilomatricoma.blogspot.com/">here</a>...) and between the two girls and their surgeries I spent six nights in Mott Children's Hospital in 2011. I thought my heart would break, I thought *I* might break, but I didn't, and we made it. And you will too. <br />
<br />
<b>Advocate for your child, get him or her the best care possible and take care of yourself and your spouse in the process, but above all, take a deep breath, because this is <i>not fatal</i>, your child will be <i>okay</i>, and a branchial cleft abnormality is but a small bump in your long parenting journey. </b>Hugs and blessings. xoxo ~Kelly<br />
<br />
<br />
<br />Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com8tag:blogger.com,1999:blog-5298465673638840161.post-62219435976226475812013-05-23T07:47:00.002-07:002014-04-30T14:22:19.704-07:00Yep, our Branchial Cleft surgeon Dr. Green is pretty brilliant...<div class="gl_headline">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhHyfOqN82NhLLbLG4SXaJTeZCBFg-tNR7M-Wjx3rh7ds47k49iTJs8A-LxmhQhVgBCZ6uQQEg1_R0Gzv9ltYSBA0iRXm_xRvJzKxgAzAaQCuXgOqEAzJOBhyl2rBJNDhIWPfp6Hd5IOQ/s1600/dr+green.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhHyfOqN82NhLLbLG4SXaJTeZCBFg-tNR7M-Wjx3rh7ds47k49iTJs8A-LxmhQhVgBCZ6uQQEg1_R0Gzv9ltYSBA0iRXm_xRvJzKxgAzAaQCuXgOqEAzJOBhyl2rBJNDhIWPfp6Hd5IOQ/s1600/dr+green.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><h6>
Scott Hollister, left, and Dr. Glenn Green of the University of
Michigan <br />used plastic particles and a 3-D laser printer to create the first-ever airway splint <br />to save the life of a baby boy who used to stop breathing
nearly every day. / AP</h6>
</td></tr>
</tbody></table>
When he's not working on rare branchial cleft abnormalities, our surgeon Dr. Glenn Green of the University of Michigan is making pediatric ENT history! Check out <a href="http://vitals.nbcnews.com/_news/2013/05/22/18425715-doctors-print-up-a-splint-for-babys-blocked-throat?lite">this MSNBC story</a> on him and his team creating the first-ever 3-D laser printed implantable device, in order to save the life of a little guy with a constantly collapsing trachea. Moral of the story? Always find a world-class surgeon to open your baby's neck. </div>
<div class="gl_headline">
<br /></div>
<div class="gl_headline">
<b>If you loved your branchial cleft surgeon and think he or she is world-class, tell us! Let's share our best branchial cleft surgeon recommendations from around the country in the comments to this post and make sure every parent can find a great surgeon in their region to consult with on this rare congenital disorder!</b></div>
Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com6tag:blogger.com,1999:blog-5298465673638840161.post-53298248167181102962013-04-03T11:31:00.001-07:002013-04-03T11:31:38.323-07:00UPDATE: Two and Half years later...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:<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHeVoLpya7Fqyi6MKo-TCPlQg7T-NgkdZRtrdCMf0_8jgOdqnzwHLnKaZkV1k_rpeluSV_PYeSgM9vYlCPCnSTd1WCPQVsq9xNcZcwwgUfulscm0nUjAneo1-dh6zxzoDiGiNJYSzBzoc/s1600/DSC_0882%5B1%5D.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHeVoLpya7Fqyi6MKo-TCPlQg7T-NgkdZRtrdCMf0_8jgOdqnzwHLnKaZkV1k_rpeluSV_PYeSgM9vYlCPCnSTd1WCPQVsq9xNcZcwwgUfulscm0nUjAneo1-dh6zxzoDiGiNJYSzBzoc/s320/DSC_0882%5B1%5D.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Can you see them? Didn't think so...It's pretty hard to photograph well...</i></td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw4JcKcWh7Zn0QCNm3YIUbCRZvJFZkTUpHVt9EllKgX1O1Vksj08zY9fp4MmKELGacpvGg3cK4q9KMsctaBFWiN2vWLwobPOjDgQ0SDHRQYxPy2FDvc_WHyRlDo_8cE3M4n8WuUjarPNM/s1600/DSC_0884%5B1%5D.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw4JcKcWh7Zn0QCNm3YIUbCRZvJFZkTUpHVt9EllKgX1O1Vksj08zY9fp4MmKELGacpvGg3cK4q9KMsctaBFWiN2vWLwobPOjDgQ0SDHRQYxPy2FDvc_WHyRlDo_8cE3M4n8WuUjarPNM/s320/DSC_0884%5B1%5D.JPG" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>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!</i><u><br /></u></td></tr>
</tbody></table>
<div style="text-align: center;">
God bless all of you and please, continue to share your stories and let us know how your little one's journey turns out!</div>
Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com5tag:blogger.com,1999:blog-5298465673638840161.post-59153513070733585132011-02-28T10:11:00.000-08:002013-04-03T11:31:53.353-07:00Four months post surgery<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqXbAfoo1t7aZV9LBC9y5uRJiDPAqjo7vdjmkM96En9D3hhqUGBpWZeplu2Ne_GremSlwK70bF29HdzNUbxwgKvIy4J2YXdm31Tc0A7eF_-y3HqsD-Sar_KX7TygKJXqGa97TJxTGjKyw/s1600/IMG_2584.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqXbAfoo1t7aZV9LBC9y5uRJiDPAqjo7vdjmkM96En9D3hhqUGBpWZeplu2Ne_GremSlwK70bF29HdzNUbxwgKvIy4J2YXdm31Tc0A7eF_-y3HqsD-Sar_KX7TygKJXqGa97TJxTGjKyw/s320/IMG_2584.JPG" width="240" /></a></div>
Her scars look quite good...yay!Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com25tag:blogger.com,1999:blog-5298465673638840161.post-63492671058733064462010-11-02T13:06:00.000-07:002010-11-02T13:06:04.665-07:00We're done!Surgery is over! It went well, although not as ideally as branchial cleft fistulas CAN go. Dr. Green, from U-Michigan Pediatric ENT, conducted the surgery and she was in good hands. Here's the basics:<br />
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Our daughter's branchial cleft abnormality was a fistula tract, with one opening at the base of her neck. Dr. Green actually SHOWED us what he excised--the tract looked like a bloody red nightcrawler worm (I actually thought it would make good fishing bait!). About the width of a pencil around and about 7 inches laid flat. This was connected at the top of her neck to her tonsils, so they had to come out in order to get all the cyst/fistula material out. If it's not all removed, it's possible it can regrow. So our little 16 month old had her tonsils removed and two large incisions on her neck. The one at the base of her neck was 4 stitches and the one further north was 9 stitches. These are ugly, large visible scars and we hope they will fade with time. But as a parent reading about this surgery beforehand, it's best to prepare yourself for the Frankenstein look on your child's neck.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFOUP9ny97ZWqiu3hb7DOTQE-ePdJfdbXZ188Zsk0ML9mOZ8VAYFLkPzPoWDQixozsBuS4sAaE-ClQiEOa97h8-pCbkrq3t8c1Y_YW_3AvJbyKYChpV7Yz0gJ0B3U8lrqMCowka4CYFno/s1600/IMG_2231.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFOUP9ny97ZWqiu3hb7DOTQE-ePdJfdbXZ188Zsk0ML9mOZ8VAYFLkPzPoWDQixozsBuS4sAaE-ClQiEOa97h8-pCbkrq3t8c1Y_YW_3AvJbyKYChpV7Yz0gJ0B3U8lrqMCowka4CYFno/s320/IMG_2231.JPG" width="213" /></a></div><br />
Her recovery was okay. The first night we spent in the hospital so she could be observed for infections or hemotomas, and hydrated intravenously. She went home the next day with antibiotics and Tylenol 3 (with codeine). She hated the T3 so we switched her to regular Tylenol on day 3 and she seemed unaffected. The first night home we woke her up to get the T3 but after that we let her sleep and she did okay. <br />
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We are going to get the stitches out in a few days and then plan to be DONE with this ordeal! God bless anyone who has a little one with this condition and I hope you have learned from our story!Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com5tag:blogger.com,1999:blog-5298465673638840161.post-59012542859973117172010-05-27T12:40:00.000-07:002010-05-27T12:43:59.695-07:00Parental Googling--AKA, a doctor's worst nightmare<div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Yes, I've become "that mom"...a week has passed since we heard Kate would need open-neck surgery on her branchial cleft fistula. Now that I have had some time to think about it, I'm flabbergasted the best treatment for this is a one-inch incision to remove a 2 cm tract. Really? I had to do some investigating. I found two interesting studies, both by Texas doctors who had done a cauterization on the tract. I'm not 100% sure either of these findings exactly parallel what Kate has, since the terminology starts to swim around on me a bit, but it seems at least worth investigating further:</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"> </span><br />
<a href="http://www.blogger.com/goog_995191259">Endoscopic cauterization of fourth branchial cleft sinus tracts.<br />
</a><a href="http://www.blogger.com/goog_995191259"></a><a href="http://www.ncbi.nlm.nih.gov/pubmed/15096432"><br />
</a></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"> AND:</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><a href="http://archotol.ama-assn.org/cgi/reprint/132/10/1119.pdf">Periform Sinus Tracts in Children</a></span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;">So, I did what any slightly obsessive, over-protective mother would do--I contacted both these doctors and asked them more. Dr. Green and U-M both have my fullest confidence, and if we need to do the full surgery, they're getting our business. I just need to know I have exhausted every non-invasive, progressive option that exists and made sure it is not a fit for Kate's particular case. Who knows, perhaps our family will pioneer the technique of cauterizing, not surgically excising, these branchial cleft abnormalities at University of Michigan hospital!!??!</span></div><div style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><br />
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</span></div>Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com0tag:blogger.com,1999:blog-5298465673638840161.post-52443240577889932922010-05-24T11:24:00.000-07:002010-05-24T11:24:09.566-07:00Types of branchial cleft abnormalities<div style="font-family: Verdana,sans-serif;">The Children's Hospital of Boston has an easy site on <a href="https://health.google.com/health/ref/Branchial+cleft+cyst">branchial cleft remnants</a>. There are four kinds of branchial cleft abnormalities, as described by the site:</div><div style="font-family: Verdana,sans-serif;"><br />
</div><ol style="font-family: Verdana,sans-serif;"><li><b>First branchial cleft anomalies</b> are rare, but do occur as cysts that lie in front, behind, or below the earlobe or under the jaw. A first branchial sinus has an external opening below the jaw and above the hyoid bone (a bone present in the neck just above the voice box). <br />
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<li> <b>Second branchial cleft sinuses</b> occur as sinus tracts with an opening on the skin of the neck during the first 10 years of life, and as cysts during the second 10 years (see Figure 1). A skin tag or abnormal cartilage may occasionally be present at the opening of the sinus, and occasionally the tract may be felt as a band in the neck.<b> <br />
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<li><b>Third branchial cleft sinuses</b> are extremely rare and are often located near the thyroid and along the front part of the muscle in the neck which attaches to the collar bone.<b><br />
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<li><b>Fourth branchial cleft sinuses</b> are also rare and are located low in the neck similar to the third cleft sinuses.</li>
</ol><div style="font-family: Verdana,sans-serif;">Dr. Green suspects Kate's is a second or third, likely second. The ultrasound done on her at two weeks indicates it is suspected fourth, but Dr. Green is more experienced in branchial cleft abnormalities than the radiologists and doubts it is a fourth. In fact, he said he had only seen one true fourth branchial cleft sinus in his lifetime and he said they are "a bear" to remove--they wrap down around the heart! This would be a very grave prognosis and require (I am guessing) open chest cavity surgery. We are prayerful it is not a fourth and perhaps even a very simple second that can be removed through the pin-hole opening only (no inch-long incision!). </div><div style="font-family: Verdana,sans-serif;"><br />
</div><span style="font-family: Verdana,sans-serif;">To determine where the tract goes, he will make a small cut on the opening and clamp the tract with a surgical clamp. Then, he pulls! He said you can see where the tract is by where it tugs on the skin. This very low-tech method determines where and how he cuts next. </span><br />
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<span style="font-family: Verdana,sans-serif;">Since we're discussing the rarity of the fourth type of branchial cleft abnormalities, it's worth discussing how rare the existence of any type at all is. They do run in families (as ours does--my brother also has a long-closed mark on his neck!) but are only seen in a small percentage of children. When she was diagnosed in the hospital at two weeks old, we had a contingent of medical students and residents tramp through wanting to examine our daughter's neck. It seems that while branchial cleft abnormalities are something they all learn about, they rarely get to see one in person (lucky us!) In fact, Dr. Green said he is referred cases from around the state of Michigan and the ENT department at U-M still only does about three or four branchial cleft cases a year! Too bad we aren't as lucky in the lottery as we are in acquiring odd medical conditions.</span>..Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com0tag:blogger.com,1999:blog-5298465673638840161.post-25598670898443317432010-05-24T07:10:00.000-07:002010-05-24T11:08:25.072-07:00A cyst is a cyst, until it's a fistula...<span style="font-family: verdana;">We met today with <a href="http://www2.med.umich.edu/healthcenters/provider_profile.cfm?individual_id=112086">University of Michigan's Pediatric Ear, Nose and Throat specialist Dr. Glenn Green</a>. He taught us that Kate's </span><span style="font-size: 100%;"><span style="font-family: verdana;"><span style="font-family: verdana;"><a href="https://health.google.com/health/ref/Branchial+cleft+cyst">branchial cleft cyst</a> is actually not a cyst but a fistula. Here's the difference:<br />
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<ul style="font-style: italic; font-weight: bold;"><li><span style="font-size: 100%;"><span style="font-family: verdana;">cyst--an enclosed structure, with no openings<br />
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<li><span style="font-size: 100%;"><span style="font-family: verdana;">sinus--a structure with one opening, perhaps internally<br />
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<li><span style="font-size: 100%;"><span style="font-family: verdana;">fistula--a structure with two openings, one internally and one externally</span></span></li>
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So she has a </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">branchial cleft fistula, at least 2 cm. long internally from the ultrasound (they lost the tract on the ultrasound screen after that, so we really don't know how much longer, if any, it is) Dr. Green told us that the only treatment for a </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">branchial cleft cyst (or fistula) is surgery, and unbelievably in this day and age, it still requires a GIANT neck incision. At least, this is what I heard. In reality, the incision will be about one inch (but that's giant on a baby girl's neck, don't you agree?) I was heartbroken about the severity of the surgery (1.5 hours long, general anesthesia, slicing my baby's NECK WIDE OPEN, risk of permanent nerve damage to the tongue and/or tonsil removal mid-procedure, overnight stay at Mott Children's Hospital, resulting inch-plus scar on my perfect child).<br />
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This was clearly MUCH more than I anticipated. I burst into fearful tears. All that for what appeared to be a pin-hold size opening on her neck? Was this worth it? Could we leave it? I likely had a </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">branchial cleft cyst </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">(closed, but still...), I had made it 32 years without an incident. Dr. Green insisted that within 7-13 years the fistula would swell and then require multiple "ladder" incisions on neck skin that is much less pliable than hers is now. And of course, the danger of infections in the neck can't be understated. We will have to remove this soon.<br />
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This is where I must question modern medicine--you can laproscopically remove a woman's uterus but you can't remove a 2 cm. cyst in a baby's neck without an inch-long incision? It doesn't seem right. If anyone knows of a less-invasive procedure on a </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">branchial cleft cyst, please share!<br />
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We have scheduled Kate's surgery for September 2010. In the meantime, I will continue to learn as much as I can about </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">branchial cleft fistulas and hope that hers remains safe until then.<br />
</span></span>Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com0tag:blogger.com,1999:blog-5298465673638840161.post-77587288630178005462010-05-24T06:45:00.000-07:002010-05-24T10:56:56.568-07:00A Branchial Cleft WHAT?<span style="font-size: 100%;"><span style="font-family: verdana;">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...<br />
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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. <br />
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Kate's </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">"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 </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">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!<br />
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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 </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">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 </span></span><span style="font-size: 100%;"><span style="font-family: verdana;">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...</span></span><br />
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</span></span>Kelly O'Donnellhttp://www.blogger.com/profile/08184901800092753650noreply@blogger.com7