Double Aortic Arch

Angela - posted on 11/13/2012

Our little girl had the surgery at 18 months, back in March. She had reflux, and bad pneumonia that led to an ENT specialist, who found the defect in Feb. Post surgery, she gets sick very easily. I was hoping that post-surgery by now, chronic pneumonia or bronchitis wouldn't be an issue, but it is. We have chest PT every day. After every cold or nasty virus, it travels and sits in her lungs. Anyone else have pulmonology visits post surgery to figure out these issues? It's hard to wonder if they are separate issues, or tied.

Nicole - posted on 10/03/2012

Hello Renee,

My son Liam (14 months) has a heart condition called tetralogy of fallot.He also had stridor when he was born and we soon discovered that after having rigid bronchoscopies and a cardiac M.R.I done that he was diagnosed with Double Aortic Arch - Vascular ring. he had the full repairment for his heart and D.A.A. He is now trached because he still had respitory issues after these surgical procedures. He also has a mickey button in his stomach for feedings.He receives OT, PT, and E.I. He's doing well as of right now and i thank god!

Renee - posted on 06/06/2012

Dawn, the best thing I can do is direct you to my blog. I have been blogging in detail about his journey to help other moms. First check out: http://bakersdozenandapolloxiv.com/apoll... One the rest of my blog you can search the categories labeled: Baby 2010 or Congenital Heart Defect.

The surgery was okay. He was in a LOT of pain afterward. It was rough. They just discovered last month he also has an artery compressing his esophagus which has been causing his eating issues. They can't fix his esophagus or move the artery so he had a g-tube placed May 4, 2012.

Let me know if you have any specific questions and I will try to answer.

Dawn - posted on 06/04/2012

Hiya Renee and anyone else...., My toddler is 2 in June and has been diagnosed with a double aortic arch too. She has a MRI next week to confirm what the surgeon will do. Then we get the date for surgery. I am wondering how your Son is now? and what he was like before surgery. The hospital has only told us how striaght forward it will be!!!!!!! I am crusing the internet for more info.....My little one has had breathing and eating issues from 6 months.

Dawn

Kelly - posted on 04/19/2012

It is a rough road. That is so true. With us, Max's double aortic arch was found quickly and the repair was done right away. He has always been a noisy breather. When he was a baby, he sounded sick all.the.time. We called him our little dragon baby.

We have not had any issues with breathing unless he is sick and suffering from something respiratory related. Now we mostly hear the stridor when he is eating and when he is very active. At first, after the surgery, the docs told us that the stridor would most likely be gone by 2 years old. They thought his cartilidge would develop and strengthen his airway. Well, that was not the case. I've heard so many terms...tracheomalacia being one of them. But, basically where we stand now is that the lower part of his airway, where the constriction of the arch was, is still 80-90% collapsed. We are now just "waiting." The doctors HOPE that this will correct itself over time as he grows. We just have to monitor him and make sure that he is not inhibited from doing things. Right now he does get loud and works hard to breath with lots of activity but we just take "rests." I just keep waiting to wake up one morning and have him be all better. Wishful thinking, I know, but I can dream, right.

I actually found your blog the other day, before coming across this site. I sometimes wonder how many other families out there are dealing with this and want to search the internet for "hope" but also fear about the not-so-happy stories that I might come across...

Renee - posted on 04/19/2012

Kelly- the surgery went well. BUT six weeks post-surgery he is still struggling to breathe, eat and sleep. It is a very rough road. He gets very out of breath when he plays or eats and I believe he may have tracheamalacia.

Kelly - posted on 04/19/2012

Hello Renee,

My son had a repair done on a double aortic arch at 8 days old.

He will be 3 in June. He is doing well but we still have our struggles.

How did the surgery go for your son?

-Kelly