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Old 11-17-2004, 11:39 AM   #1
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cajunmommy HB User
Question Atrial Septal Defect

I just found out that my 6 yr old son has this. His doc is giving it a year to see if it corrects itself than it is up to me if I want to do the surgery to correct it. I was just wondering if anyone has this and has lived with it.

Thank you

 
Old 11-18-2004, 04:39 PM   #2
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hypokelly HB User
Re: Atrial Septal Defect

Hi Cajunmommy,
I feel for you and know what you are going through. My daughter has congenitial heart disease(interupted aortic arch and AP window)If I remember correctly AP window is an ASD. My daughter has had open heart surgery 3X, not just for the ASD.She is 11 yrs old now and doing well, but may be getting a pacemaker, again unrelated to the ASD. Im' sorry to hear that the doc would give you a decision like that to make.Is it not their job to decide whether the patient needs surgery?
I wish you and your son well,
Take care, Kelly

 
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Old 11-18-2004, 05:00 PM   #3
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cajunmommy HB User
Re: Atrial Septal Defect

Kelly,

I am so sorry to hear about your daughter. When we went to the cardio I was so heart broken over some the kids that where in there. The doc says that many people live with it. It is just odd because most of these people have down syndrome (spelling??) So he wants to send us to a gene specialist. The problem comes in when he will be a young man. The doc says that Atrial Septal Defect patients are extremely likely to have a stroke by the age of 30. That is why he says that it is up to me. It is hard to know what is right to do.

god bless you and your family.

Happy Thanksgiving

 
Old 11-18-2004, 09:22 PM   #4
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Kitten1980 HB User
Re: Atrial Septal Defect

I have AFD and I'm 24 years old, I run a mile three mornings a week, I rollerblade, bike, swim, and babysit my 2 & 4 year old God-children (the mothers here will realize that can be an athletic event in itself). Not to brag but I graduated in the top 10% of my high school class and graduated college with high honors. The point is, I have a healthy, happy life despite the AFD.

When I was younger I was prone to dizziness and/or fainting spells from intermittent rhythm problems and the mixing of oxygenated and unoxygenated blood, and I had & still have a heart murmur. As I got older the AFD closed to some degree but not completely; I sometimes get dizzy or light-headed for a few seconds if I over-exert myself and I get PACs fairly frequently but other than that I don't have any clinicallly significant problems to speak of.

Now, since I have AFD and a resulting heart murmur I need antibiotics before surgeries or dental work because I am at an increased risk for endocarditis (an infection in the heart). There's also the risk of atrial tachycardia, atrial fibulation, and/or blood clots.

On the flip side, surgery could close the AFD but it is also not without it's own set of risks. Blood clots from the heart-lung bypass machine, problems with the anesthesia, scar tissue in the heart from the surgery causing PACs, and the need for antibiotics before dental work or surgery because of the increased infection risk.

Basically you need to talk to your doctor about the benefits vs. risks regarding your child's specific symptoms. Realize that 'fixing' a heart defect with surgery still makes one a chronic heart patient. And, speaking from experience, kids understand more than we give them credit for so be sure to explain the options, risks, and benefits to your child and get his thoughts on the subject. After all, he is the one who ultimately has to live with it.

Just my two cents and as this is my very first post here I hope I haven't intruded

 
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