Pediatric Heart Expert Forum
double aortic arch related concerns
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double aortic arch related concerns

Hi

I came a across an answer to one of your questions recently which has made me worry! I have a nearly 18 month old son. At 4 months old he was diagnosed with a double aortic arch, was operated on at 5 months and has done well since. Prior to diagnosis he was essentially well though had some noisy breathing, but at 4 months a bout of paraflu left him in ICU for 8 days, following which he had a bronchoscopy and was diagnosed. I think we were relatively lucky.

I had googled at length after our lengthy hospital stay (we are in the UK) and had found that DiGeorge syndrome was linked to double aortic arches. However he has no other symptoms of this, no facial characteristics or signs of developmental delay. Other than when he had the paraflu, he has been a very well ittle boy (though I was told that he had some mild tracheamalacia and so for  a long time we tried to avoid as many germs as possible.) Your answer a few months ago to a similar question however made me wonder whether he should have been tested for DiGeorge, just in case. However if he has no other problems, would there be merit in a diagnosis, anyway?  We have been signed off by his cardiac consultants here a long time ago so it is not easy to ask them, and my instinct (and my husband's view!) is that I am probably Googling too much and worrying unnessessarily.

My other on and off concern over the last few months has been the possibility of his catching the paraflu again. I know it is a common virus so that this is pretty inevitable at some point. Would it be the case that, as he has now been operated on, the mechanics are different and so he should be ok? Although he did have some tracheamalacia it is mild and we only hear a little bit of noisy breathing now sometimes for a few minutes when he is very excited, or eating.
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773637_tn?1327450515
Dear Tholeon,

DiGeorge syndrome, unfortunately, can have what is referred to as "variable penetrance", which means that kids can have quite the normal appearance, and yet still carry the gene mutation.  Therefore, since there are certain congenital cardiac defects that are seen in higher frequency in association with DiGeorge, we automatically check.  Double aortic arch is definitely one of them, so I do support your concern that this testing shoudl be done.  It's quite easy to do now.

Although he has had parainfluenzavirus previously, there are many strains of the virus as well as mutations, so he could not only get parainfluenzavirus again, he could get another virus which could adversely affect his airway.  What is in his favor is that he is larger, as is his airway.  This risk of airway obstruction decreases the larger it gets.  Therefore, as we go into this year's cold/flu season, he will need to be loosely observed at home for problems with his breathing, of course, but his risk of serious complications is likely to be less.  It sounds like he still does have some aspect of tracheomalacia, which will eventually resolve as he both grows as well as stiffens the cartilaginous rings around the trachea.
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773637_tn?1327450515
Jeffrey R Boris, M.D.Blank
The Children’s Hospital of Philadelphia
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