Hi There, I have used your forum before and found it very useful, we are waiting to see a specialist in Leeds, England who will be performing surgery on my 17MO son. He has a double aortic arch and the only symptoms he has at present is Stridor on increased excersize/activity. The story goes back a long way but he got croup (paraflu) 4 months ago and went into resp arrest 3 times, was put in ICU and during a routine Intubation tube change the tube blocked and he had a cardiac arrest for 6 minutes and suffered SEVERE hypoxic damage. The diagnosis was awful and he wasnt supposed to even live.. I am happy to say he has nearly fully recovered and his recent MRI showed little damage except to a small chance his balance would be affected. Since then they did a routine broncoscopy and realised his trachea in the last 3rd was pushed in, they could however still get a size 5 tube down during a recent intubation for his MRI. on this test they noticed he has a DAA, all the branches come off the right side of the arch which I am told his good news. How difficult is the operation and what are the risks, I am told its closed heart surgery and bypass is not required is this correct and how long should it take for his airway to get back to normal afterwards, also how long should the operation take to perform and how long will the ICU stay be?
Also should his activities be limited before the operation and what are the risks of just leaving the arch alone? another thing that puzzles me is why was the stridor not present before the bout of paraflu and on exersize there was no stridor or anything and now he sounds awful since the incident, it doesnt make sense.. anyway your help is greatly appreciated and apoligies if we have spoken/emailed before.
The operation to repair double aortic arch is not difficult in the hands of an experienced congenital cardiac surgeon. I cannot say for sure how quickly he should recover, but he should likely be able to go home within 3 to 5 days of his surgery. His airway should be able to be “normal” as soon as the other arch is removed, as the compression on the airway will have been relieved. That said, a double aortic arch chronically compressing the trachea (airway) can lead to softening of the cartilage that helps to keep the airway open. This is called tracheomalacia, and it can cause the airway to collapse at times during breathing in. This can take a while to resolve despite the relief of the external obstruction to the airway.
Prior to the operation, he should be able to self-limit his activities, which toddlers are quite good at doing; they quit when they just don’t feel like doing it anymore! If his double aortic arch is not eliminated, this will become a greater and greater obstruction to his airway as he grows, which will limit his ability to have a normal activity level and may put him at greater risk for lung infections.
As to why this was not previously diagnosed, I cannot say for sure why this was not found until later. It may have been that this was not initially compressing his airway as much when he was younger.
Finally, these are all questions that you should be able to have answered by your cardiologist in Leeds. If you are not getting the answers to your questions, you should seek a second opinion.
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