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Coarction of the Aorta (narrowing in the arota)


Forum: Preemies/NICU

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  #1  
March 11th, 2012, 09:35 PM
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My wee one was diagnosed last week with a Coarctation of the Aorta (This is a narrowing in the aorta which causes blood to back flow) and we were informed that she will have to have surgery to correct it. So I was wondering who else had preemies that had this, what was recovery like afterwords, and how are your babies doing now? The Pediatric Cardiologist did not explain anything more to us then the procedure. So if anyone could tell me their experience with this or other preemie heart surgery, it would help me out. I am just really worried so it would help to hear others experiences.

Last edited by Sophiesmommie; March 11th, 2012 at 10:00 PM.
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  #2  
March 12th, 2012, 06:30 AM
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Welcome! I'm Beth, mom to Jim who was born at 27 weeks and is now 4 1/2, and Maggie, who was full term and is almost 5 months. I don't have any personal experience with the heart problem you're describing but hopefully someone else can chime in...I hope the surgery goes as smoothly as possible! Keep us posted!
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  #3  
March 12th, 2012, 10:39 AM
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Yeah it seems no one really has an info on it or even heard of it. Oh well! I'll keep searching!
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  #4  
March 13th, 2012, 07:19 AM
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I'm on my phone right now, but I have some insight for you. I'll write more when I get home.
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  #5  
March 13th, 2012, 09:43 AM
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Okay, so my kids did nit have COA but I'm a nurse in the NICU now and have a number of patients who have had it. Most do very well with the surgery. A friend has a child who had that surgery at a few months old and is now 10 years old and doing great. It is a big scary surgery, but most kids do amazing! A lot depends on how bad the narrowing is and how big it is. Good luck!!! kUP!
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  #6  
March 13th, 2012, 07:30 PM
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I guess it just worries me because she is three weeks old or -1 week 3 days. But I am glad at least someone knows about it. I have asked around on several different forums and no one had ever heard of coa. So it made me nervous.

Last edited by Sophiesmommie; March 14th, 2012 at 09:58 AM.
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  #7  
March 14th, 2012, 08:32 AM
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Are they talking about doing surgery now? How big is she? And yes, we are a level 3 NICU and see COA a few times a year. It isn't super common, but I've worked there for 3 months and did my internship there the 5 months before that and I've seen 4 cases.
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  #8  
March 14th, 2012, 10:34 AM
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Yes they are talking about doing it now the Cardiologist said that the Surgeon over at Seattle Children's Hospital is going to want to do it immediately because there is already a difference in her blood pressure in her arms then her legs. They were suppose to meet on Monday to discuss her case and then I have an appointment with him tomorrow at 1300 to see what the plan is. She weighs right now 5lbs, she actually just hit 5lbs today. And my days must be really messed up -.- for some reason I thought yesterday was the 6th -.- not the 13th. She is -1 day now. Tomorrow was her due date. I apologize I haven't looked at a calendar till today.
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  #9  
March 15th, 2012, 05:03 AM
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Oh she is a big baby! (I'm sure not to you, but she really is.) I hope the surgeons give you some more confidence after you speak with them. I'll be praying! KUP and I'm sure she'll do great!
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  #10  
March 15th, 2012, 04:46 PM
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Lol I know she is big compared to when our 25 weeker was born. He was so tiny! Thanks for the information. I really appreciate it.
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  #11  
March 24th, 2012, 04:18 AM
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So Surgery is Tuesday for coa and then they are saying the might have go in there and operate on her pulmonary valve because it's thick.
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