Peridot Kids

My August babes and their issues: ear tubes, laryngeal cleft, MSPI, cyclic vomiting syndrome, asthma, allergies and a congenital heart defect. Join us for the ride of tears and joy.

Laryngeal cleft August 14, 2008

Tracey @ 1:38 am
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

 

 
 
 
 
 
 

6 Responses to “Laryngeal cleft”

  1. Meredith Barnett Says:
    May 26, 2009 at 11:52 am

    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.

    Reply
    • Hannah Says:
      July 14, 2009 at 9:59 pm

      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.

      Reply
    • Kristine Says:
      October 27, 2009 at 8:07 pm

      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.

      Reply
  2. Lisarose Galloway Says:
    June 1, 2009 at 2:24 pm

    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.

    Reply
  3. jean gallagher Says:
    June 22, 2009 at 5:11 pm

    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.

    Reply

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