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Interrupted aortic arch with ventricular septal defect


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  #1  
March 14th, 2011, 09:22 AM
Alison81's Avatar Platinum Supermommy
Join Date: Sep 2005
Location: New York
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Last sunday my son was diagnosed with this defect at 4 days old. He was in cardiogenic shock by the time he was diagnosed in the ER, suffered some organ damage, but his organs have repaired themselves, and his bloodwork has come back great so he is scheduled for open heart surgery to fix the two problems tomorrow. They also say he may have a syndrome called digeorge syndrome, which is common in children who have this heart defect but we won't know until he's around 3 months old. He doesn't have any facial features associated with it, and no other symptoms other than the heart defect but it's a possibility. And during the repair they may have to do a rastelli procedure, if they can't fix the heart the way they want to, which means 2-3 surgeries as he grows. The surgeon won't know if he needs this until they begin surgery.

Just wondering if there is anyone else who has experience with this? I am still so shocked that he was born with a defect, and sad for him that he has to go through so much.
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  #2  
March 15th, 2011, 08:12 PM
MellieB's Avatar Platinum Supermommy
Join Date: Nov 2005
Location: Melbourne, Aust.
Posts: 64,110
Welcome.

My son's defects were different but he also faced at least 3 open heart surgery's to repair his defects.

I do know however that the Rastelli is often used to correct a transposition of the great arteries. I also know how hard it is not knowing with certainty of what will happen until surgery.

Have you been able to speak to anyone about it? What sort of support system do you have? Do you yet have a date for surgery?
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  #3  
March 16th, 2011, 02:18 PM
Alison81's Avatar Platinum Supermommy
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Location: New York
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Thank you. He had surgery yesterday and they were able to repair it how they wanted, and he didn't need to use a rastelli procedure, which is good news. He won't need any more surgeries in his life.

He had some complications with surgery, he had bleeding at a suture site so the surgeon had to re-explore and stop the bleeding, but it did finally stop. And right now he has a pacemaker in place because his heart rhythm was off but the surgeon thinks that is due to the stress of the surgery and will correct itself. Right now he is doing really well, even woke up this morning and was being super cranky so they had to sedate him. But I am told him being angry and awake is a good sign. He still has a patch over his chest and will close it in a few days.
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  #4  
March 18th, 2011, 11:38 AM
lilredheadgirl's Avatar Veteran
Join Date: Dec 2008
Location: St. Paul, MN
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I dont know anything about an interrupted aortic arch, but my daughter was also born with a VSD. She had a patch placed at 5 months and now we only go in for yearly check ups. I think she was a little slower at developing her major motor skills because of the surgery, but that is purely my opinion, she crawled at 9 months and walked at 15 months. I think if the doctors are looking at him positively than you should too.
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