coarctation of the aorta

Stacie - posted on 03/09/2009 ( 9 moms have responded )

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Hi, I am new here. My son had a murmur when he was an infant and he had an echo done at 6 years old to document closure. Well, it is closed but then they found he has coarctation of his aorta(narrowing of it). Supposedly it can be fixed with an angioplasty. I sure hope so. If any of you have any info or any words of wisdom I am willing to listen. I know I don't have it as bad as some of you and my thoughts are with you. Take care.

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Beth - posted on 11/04/2012

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my daughter was born with coarctation of the aorta and a bicuspid aortic valve but the doctor did not detect it before we were sent home. a week later she started breathing funny. when I put her up on my shoulder it sounded like she was gasping. this was on a Sunday and I knew something was wrong and didn't want to wait a day until her doctor was open. I took her to the e.r. where we were told she had pneumonia. they admitted her to give her i.v. antibiotics. 5 days, 3 X-rays, many tests including a semi positive reflux test later she was getting worse not better. she still had spots on her lungs and had stopped nursing. our idiot dr wanted to put her on reflux meds and send us home. I refused and asked to see a specialist about the reflux (that supposedly caused the fluid in her lungs). so the dr transferred us to another hospital to wait and see the specialist. when we got there he nurse took her vitals to check her in. my daughter was turning blue. the nurse called in a whole group of nurses and doctors. after they checked her out they said she needed to go to I.c.u. for an oxygen treatment. it was about an hour later that we learned of her congestive heart failure and she was med flighted to a big hospital 2 hrs away. it took 6 days to stabilize her for surgery. her coarctation was so severe they had to cut it out then reattach the aorta. she went home a week later. at 2 months old the aorta began to close again from scar tissue. she had her first angioplasty to open it back up she did beautifully until she was 11. then the scar tissue came back and she had her 2nd angioplasty. the tissue is so thick that they could not stretch it all the way open. she still has a small narrowing. so she will need a stent when she gets older. she has been a cheerleader for the past two years and has done well. her bicuspid aortic valve is functioning normally for now but they check it annually. she has been told not to do competitive sports. so we don't think she will continue cheering in high school next year. I now worry about aneurisms and valve stenosis. I try to keep her in a bubble. the worry never leaves me.

Stacie - posted on 10/25/2009

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Thanks, he has done well. Thanks for writing. I will let you know if anything else comes up.

Mindy - posted on 04/19/2009

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My daughter now two had the coarctation of her aorta repaired when she was 9 days old. She is now doing quite well. She has a small VSD and bicuspid aortic valves, but looking at her you would never know. She had the coarctation reapired at Children's Hospital in Boston, and has had numerous cardiologist re-checks since. They told us if she had any narrowing again, they would do the angiopalsty, and she would be fine. I would like to say that deep breathing helps for relieving tension, and try to remember that kids are extremely resilient and I am sure that your son will be just fine. Don't hesitate to contact me if you have anymore questions or just need have someone listen. :) Best of luck to you and your son. ~Mindy

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Leila - posted on 01/24/2011

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Hi, my son Taylor had severe coarctation. He had closed heart surgery at 4 months. In surgery they placed a large patch on his aorta instead of an end to end repair. Has anyone else had the patch? He has high blood pressure and is on inderal, but is doing great.

Anna - posted on 06/04/2010

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Hi. My daughter was born at 26 weeks, diagnosed with co-artation of the aorta and PDA at 27 weeks and had her repair surgery at 29 weeks weighning only 900 grams. She then went on to have the balloon dilatation at 40 weeks. She is now 5 and at her last cardiologist check-up, we were told she only needs to be checked every two years now. Heart children are usually cold and clammy, compared to normal kids and they do have their little quirks. My brother in law had the dilatation in his twenties and he is now fine. All the best.

Mary - posted on 10/24/2009

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My son Gage was born with a severe CoA and had his first open heart surgery at three days old...since then he's had to have several serguries because of his rare case (he's 16 months old now and doing well), but the doctors do say that an angioplasty is very successful in most cases. (I know many people whos children have had the angioplasty and it worked great) I'm sure that you're son will do fine, and I know it can be overwhelming so if you ever need anything you can always send me something and all help you in whatever way that I can!

Kayla - posted on 04/21/2009

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Hi. My son has COA as well as Hypoplastic Left Heart Syndrome...he had to have ohs in February for his HLHS, and they went ahead and fixed his coarctation while they were in there. But I've talked to families who's little ones have been fixed via angioplasty with great success. Hang in there!

Stacie - posted on 04/19/2009

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Thanks Mindy it helps to hear of other stories. I think he also has the bicuspid valve too. I am not quite as stressed any more. It is scheduled for May 14 in Minneapolis. Right now I think I just want it over with so we can move on to the next challenge life will throw us. Thanks again for your note.

Colleen - posted on 03/11/2009

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My son Michael was 8 days old when he had a coarctation of the Aorta repair, however they did open surgery, because he was a new born and the Angioplasty wouldn't work for his size. He is my little Fighter and came out of it better than they expected. He will always have his cardiologist in Boston for the rest of his life, however we have upgraded to yearly visits minus any abnormal pediatrician visits! He is doing Great!

Michael also is Dextrocardia, which means his heart is centered in his chest and flipped over. You will get through this! We were given not so good odds when I was pregnant with him, but he is here stronger than I could have ever imagined! Please feel free to talk to me anytime if you need an open ear! God Bless!

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