Does anyone have any experiences with the relationship between tracheomalacia and respiratory issues? I’ve read in the TOFS book, but I want to learn as much as possible.  My daughter has just been diagnosed with mild obstructive sleep apnea….which I feel is a result of the tracheomalacia and not the “typical” tonsils/adnoids combination.  I am in America, and it seems as though many children (not TOFS) are being diagnosed with sleep apnea and having this tonsil surgery.  I feel like grouping my daughter with those children is not right.  The doctors cannot tell me the etiology and I feel that putting her through another surgery (she’s had 7) would place her at risk for pneumonia and other complications.  She is one of a twin, born at 32 weeks (her brother does not have medical issues).  She has TOF/OA but other than eating and respiratory (easy to get sick), she is developing wonderfully.
Thank you
Linda, Cheyna Skye and Ryan Michael

Dear Linda,
  I do feel for you and your family as it has been tough coping with one child with TOF let alone twins one being a TOF. My son who is now 2 was ill for 5 months and in this time he had 3 ‘dying spells’. This resulted in being resusitated for sometimes up to 10 mins as every time he started to breathe he would vomit again and would stop breathing! Linked with these spells was a 5 month cough(not the typical TOF cough)which I was told was Asthama and given inhalers.He had recurrnet breathing issues every 3 weeks over this period and I was told by my local hospital after many trips every time in was ‘croup like symptoms’. He was sick after every bottle and was generally a very unhappy little boy although developing well. Eventually after going private to see an amazing Professor at Great Ormond Street he knew within minutes what he thought was wrong and sure enough a Bronchoscopy 2 days later revealed severe Tracheomalacia(my suspision for the last 5 months). Kyle had already had a Bronchoscopy some 3 moths earlier following the 2nd dying spell but apparently it did not show the Tracheomalacia(this I find hard to believe. Nevertheless Kyle had the Aortopexy in February 2008 and to start with had a few upper respiratory infections however his eating and swallowing improved immensly, no cough, no sick and more importantly no more ‘dying spells’! He was seen by a respiratory expert as a follow up who has put him on a very small dose of antibiotics 3 times a week through winter and we have had no colds,coughs or hospital trips since October 2008 which is amazing as previoulsy hospital was our second home!
  Hope this is of some help and if you want to know more then just e mail me.

      Best wishes to you all especially your dear little girl.

              Suzanne