Laryngeal cleft

Laryngeal cleft (medical condition): A rare birth defect where there is an abnormal opening between the larynx and esophagus which allows food to get into the airways and even the lungs.  The severity of the condition is determined by the size of the opening.

 

. Symptoms are swallowing problems, gagging, choking, coughing, frequent respiratory infections, and chronic lung disease.  It is usually diagnosed after having failed swallow studies that show aspiration of liquids and/or solids.

Treatment usually involves surgical repair of the cleft depending on the severity.

Unfortunately there isn’t much information regarding this condition on the internet as it is so rare.  Do you have a child with one?  If so, feel free to visit my support group/message forums at http://laryngealcleftkids.ning.com

 

 

 
 
 
 
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13 responses to “Laryngeal cleft

  • Meredith Barnett

    Thanks so much for your work on this website. I found it after searching for pediatric dysphagia today. My 11 month old just failed his second swallow study. He has been on honey-thickener since February. They started him on honey-thick barium today and he did great. They gave him nectar-thick next. He penetrated on the first two swallows and had silent aspiration on the third swallow. The SLP acted like he may just grow out of it when he starts walking. She said he can be retested in three months. I am wondering if you think I should insist on the test that checks for laryngeal cleft. I have never heard of this until your site. I know you aren’t a doctor. But I am really looking for advice from an “expert mom”. Thanks for taking the time to read this.

    • Hannah

      Hi Meredith,

      I’m sure Jenny’s mom has already responded to you–but I just saw your note and thought that I would add my two cents as well, since I certainly would have appreciated any advice when we started going through this with my son.

      Not sure where you are located, but no matter where you are, you should get in touch with and set up an appt. with Dr. Reza Rahbar, who is head of the Ctr. for Aero-Digestive Disorders at Children’s Hospital. He is absolutely wonderful and his team is VERY thorough. We are from TX and have been working with them for the past year. We went to them after we spent almost a year looking for help and answers here in TX, and finding none. They have not only been critical in managing Aiden’s care, they have also found several issues that were missed here in TX, including a Type I Laryngeal Cleft (this after our ENT docs here told us that there is no such thing as a Type I cleft). Dr. Rahbar will be performing the corrective surgery on my son in two weeks.

      I can’t say enough about Dr. Rahbar and the docs that work with him, particularly the GI doc (Dr. Rosen). They are fantastic, and it is totally worth whatever it takes for you to get there. Please feel free to contact me with any questions: hannah@veritaz.com.

    • Kristine

      I just wanted to reply b/c a year ago my son was diagnosed with aspiration and they did the triple scope (which helps to ID the cleft) Childrens Hospital Boston said he did not have a cleft, but on 2nd opinion with Dr. Hartnick at Mass Eye & Ear in conjunciton with Mass General they believe he does have a cleft. We have used thickened liquids for a year now and its not better, so he is now having the scope again and cleft repair at Mass Eye & Ear. There is some possibility its muscular as to why he aspirates, but more often than not its the cleft that won’t repair itself. My son was 1 1/2 when this started and is now almost 3. Dr. Rehbar at Childrens is well known and did not do our original scope, but I am going with Dr. Hartnick for this cleft repair.

    • Lela Perez

      My daughter was born in Feb of 09 and she was born at 34 weeks gestation…She spent the first 16 days of her life in the Neonatal Intensive Care Unit…the drs couldn’t figure out why she kept turning blue every time that she would eat from a bottle…I was getting frustrated with not getting answers and with the staff since they couldn’t explain anything to me…she was finally release only to be re-admitted into the pediatrics floor a week later for pneumonia…my little girl, my preemie went through 6 video swallow studies at our local hospital and we keep being told to return every two months….she was on Honey consistancy thickener…I fought with drs for 2 1/2 years to find out what was wrong with my daughter…finally, I had made a mistake on one of the many drs that she was seeing at our closet Children’s hospital Children’s Mercy…when I had to tell the new dr all about her medical history he told me that there was a dr that specializes in looking for abnormalities in the laryx area…I was on edge the whole time she was in there because what started out as her getting tubes in her ears ended with far more…I finally had an answer to my prayers…My daughter’s physican that did the surgery found a Type II Laryngeal Cleft and did a gel foam repair…It didn’t work the first time but it has finally brought her down form Honey consistancy to Nectar…She is scheduled to have another gel foam repair in September of 2013 and I am praying that this one works…if not she will have to do the other surgery that is longer and if it don’t heal right she won’t ever be able to have a gel foam repair done again…I am grateful to know that I am not alone in this as it may not be much of an issue to some but it is an issue to me as a parent and I hate to see my daughter struggle just to drink something without choking on it…

  • Lisarose Galloway

    My 4 month old son was just diagnosed this morning. I just left a message on your blog an will be joining the support group right now! Thanks so much for offering this! I am in pursuit of finding out everything that I can.

  • jean gallagher

    Granddaughter who is one needs the surgery for laryngeal cleft and we’d like to find a great specialist in California. Help with any infor.

  • Chris Anderson

    Hi Tracey,

    I haven’t written in quite awhile, hope all is well with you and your family. I think the last time I wrote was almost a year ago about my daughter Kira. I think I may have asked before, but I am wondering if you have ever been contacted by someone whose child required the corrective surgery more than once for a laryngeal cleft stage 1. Kira is still continuing to have aspiration issues and has been using thickener in all liquids since March 2010. We ended up switching doctors in Dec. 2009 and are now seeing a doc in San Diego. Kira has been scoped twice since Dec. and both times everything looked good from the corrective surgery, but during a swallow study in March, aspiration was detected with all liquid consistencies. The new doc is not sure what the issue is and we are in a holding pattern right now. Kira is going in for hand surgery next month and the new ENT will be present to take a look. The ENT thinks if Kira outgrows this, that it will be possibly years before we would see an improvement. I wish we could find a light at the end of the tunnel. Thanks for your time.

    Sincerely,
    Chris

    • Hannah

      Hey Chris, just saw your post and wondered if you had since found any answers or addt’l information to your questions and difficulties with your dd’s laryngeal cleft repair?

      Thanks,
      Hannah

  • angela lewis

    my son gabriel just had an n.g tube put in.after pnemonia’s last year he was put on honey thik liquids &refluxdisphagia.hes on a second set of ear tubes,he’s awaiting a laryngealcleft repair,at ohsu dornbechers childrens hospital.he has the feeding tube for 2 monthes to drain fluids out so they can repair the cleft.it’s along process but there is light at the end of the tunnle. thanks angela

  • Lia

    My son Joey had been vomiting 5 tones a day for 8 years… 24 specialists, 9 pediatricians, and 24 times in ER with ” croup”… Ent for 6 years… All missed The laryngeal cleft. Ugh. Now he’s 10 with a type one… No infections anymore but still coughs/ chokes with liquids and some foods..Children’s here dies not think it needs to be fixed… Any opinions? One of dr. Rahbars associates just moved to Chicago and I’m going to see her on Monday… If he needs surgery I’m on my way to Boston. Any advice. I think I’m going crazzzzzxy. Errrr

  • Angela

    Hi,

    I’m glad that I found your blog!
    I’m in desperate search for any specialists or hospitals that can save my son.
    He is 2 weeks old and has a very serious combination of LARYNGEAL CLEFT (type 4), ESOPHAGEAL ATRESIA and TOF.
    We live in Hong Kong, but the doctors here don’t have the neccessary experience to offer any kind of treatment for him.
    Therefore, we are desperately trying to find a doctor/hospital outside of Hong Kong, who could help us and take over our son’s case.

    I joined your support group today, but my status is still pending, so I couldn’t post anything there yet!

    Could you please let me know if you know anyone who could help us?

    Thanks!!!
    Angela

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