Atrial Septal Defect

Updated on February 04, 2007
J.M. asks from Liberty, IN
11 answers

My now 2 yr. old daughter was diagnosed at 7 months with and Atrial Septal Defect (ASD). We returned to Children's Hopsital for her yearly exam this past fall and there has been no change in the size of the hole - but because she is otherwise healthy we don't have to go back until the fall of 2008. We know there's a small possibility the defect will close on its own - but we also know that if it doesn't close we are looking at two possible fixes - one being open heart surgery and the other being a cath procedure to fix it.

I was just wondering if anyone else has gone through this, or is going through it. It scares me to death to think about her actually having any procedure done to her heart - much less open heart surgery. We're just praying it closes on its own!!!

**Many of you have asked - the hole itself is oval shaped and about half the size of a dime - doesn't seem that big until you think about the fact that her heart is the size of her fist - and a 2 year olds fist is pretty small! :) **

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B.C.

answers from Canton on

My oldest was diagnosed with VSD at birth. He has annuals done and the hole seems smaller yet hasn't closed. We will have OHS when he is a teen and just watch it until then.

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J.B.

answers from Dayton on

I don't know if what i have to say will help you or not, but I am hoping it might. My youngest daughter just turned a year old last week and has had 4 brain surgeries. It isn't easy going through the actual surgeries, but the only comfort to myself was this....I have to trust that the doctors will do what they think is best and necessary and I can't worry myself over whether or not it was the "right" decision because I am not a doctor. They are the ones who know more than I do about all of this and I pray that they know what is best. If your doctors tell you something needs to be done then I would probably just go with that. There is NOTHING that will make it easier if your child has to have any sort of surgery except faith in God and the doctors.

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T.D.

answers from Cleveland on

I was diagnosed at age 28 with an ASD. The recommendation was for me to have surgery at some point to close it, as my biggest risk is for a stroke. At 29 I became pregnant, which put off the surgery. I have now had 5 children and I am 37. I still have not had the surgery because I am either pregnant or nursing all the time! The hole in my heart has not changed in size and has not caused any other problems yet (such as enlarging one side of my heart.) I do plan on having the surgery when this baby (8 mos.) is finished nursing.

Within the 3 years after my diagnosis, two of my sisters were also diagnosed with ASD! They were each 28 when they found out. Can you believe the docs say it is not hereditary? One of my sisters had open heart surgery the day after diagnosis because of the size of her hole and a few other factors. The other sister was basically told not to worry about it.

One more thing I want to mention is about my my 4th child. I thought of this because of Lisa's response. My daughter, at age 12months, was diagnosed with infant or congenital glaucoma. There were no symptoms. We found it by accident. She had surgery within a week. The surgery went perfectly and she healed quite quickly. It seemed to not phase her a bit! I am telling you this because, like Lisa said, it is so hard to allow your baby to go under the knife like that! I know it is crazy to think about someone cutting near your baby's heart, but with us he was cutting her eye! It is an awful feeling, but amazingly it all works out. Just have faith!

Speaking of faith, we took our baby to a healing service with Dr. Nemeh. We believe she received a miracle. That is another story! If you want that one, feel free to send me a message. Take your baby to a healing service! www.drnemeh.com

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D.C.

answers from Columbus on

Hi J.,
While I have no children who have gone thru this type of defect, I have a close childhood friend who was born with it. His actually closed on its own, no surgery needed. His condition inspired him to become a doctor himself later in life. He is now about 37 years old, and in great health. I just thought I'd share this with you so you can see there are people who have been able to go on and lead a fulfilling life. Best thing you can do is to keep your chin up, think positive thoughts, and (if you are spiritual)pray. Count your blessings, and enjoy every precious moment with your family.
D. ;-)

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C.O.

answers from Cincinnati on

I too was born with a hole in my heart about the size of a nickle. The doctors kept an eye on it over the years, and when I was 11 yrs. old I had open heart surgery at Childrens. This was back in 1975 and I was one of the first to have the incision under the breast area, so that when I wore a bikini top, you couldn't tell the scar was there. It worked out beautifully and now I'm a 42 yr old mom with 3 kids. Good luck and have faith.

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B.N.

answers from Toledo on

I'm sorry, I don't have any advice or really know anything about what you and your family are going through. But, I do want to tell you that your family is in my thoughts and prayers. If you just need someone to talk to or support I am good at that. Contact me anytime. Good Luck!! I'm sure it will closer on its' own.

B.

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S.M.

answers from Cleveland on

Hi J.,
While I can't give you advice about your daughter, I can tell you that I am going through the same thing. My daughter is two and half. At her yearly check-up at 12 months, they heard a murmur. She then went on to the Heart Center at Akron Childrens where they too found a ASD. She went back the same time but a year later. They didn't check her with ultrasound or anything like that. Dr. Lane just listened to her and told me to come back when she was 4 which will be the summer of 2008. I am terrified about it and wonder if it will affect her or if she will have to have any surgery done. All I can do is pray and I recommend the same thing to you. Just remember your daughter is product of you and her father. I am sure she is a strong little girl and your must be strong for her as well. Email me if you ever want to talk about it. ____@____.com. I am a mother of 5 so I know how hard going through things with children can be. Best wishes to you and your family.

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R.P.

answers from Youngstown on

Hi,
I just want to put your mind at ease a little. I am an echocardiographer and I have seen many people with atrial septal defects who do very well without surgery. My daughter who is now 13 months also has an ASD. I too hope and pray that the hole will close on its own just because. I was very upset at first but then I remember all of the patients that I see each day that are doing well. I hope that kind of puts your mind at ease.

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J.K.

answers from Cincinnati on

I have asd..i had open heart surgery at 16, They tried one thing first that would have left no scarring and so see if your dr will do that first. The run what is like a ballon thru your thigh up the body in to the heart and when they get to the whole they open the ballon and skin or muscle grows over that and the hole is closed...my hole was to big and this didint work. I do have a scar running between my breats that you can notice at the top of my breast but the rest in hidden between them..the scar now is very light in color. The surgery itsself is not bad and i was up and around in about a week back to almost normal

H.S.

answers from Cincinnati on

HI J.. I was born with a ventricular septal defect(VSD), my hole was the size of a quarter, and I had corrective open heart surgery at the age of 2. Which was in 1980. At the time it was a moderatly serious procedure, and since then, it has become very common, well researched and one of the more basis procedures done. Not to say that it's nothing to worry about. But simply know that the survival rate is 100%. My stay at Childrens was 8 nights. But I hear that these days the average is 48 hours. The scar for girls is hardly noticable once developed. It hides under the breast tissue. I hope the best for your situation. Just try to breathe easier. Take care. And good luck with number 2.

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L.L.

answers from Cleveland on

Hi J.,
I am L., 35 yr old mother of 2, married for almost 14 yrs. My son is 10 and my daughter is 7. The reason that I am responding to what you wrote is my son was diagnosed at 7 weeks old with having a ventrical septal defect {VSD}. At 7 1/2 mths it had not gotten any smaller so his cardiologist did a heart catherization to see what could be done. {he came through that procedure like a champ} Well, as it turned out...he needed surgery to repair the hole. At 8 1/2 mths old my son had open heart surgery. I believe that was the hardest thing that my husband and I have been through. But as before he came through the surgery like a champ. We were prepared for the worse and came out of the situation so much better. His surgeon was wonderful and answered any question we may have had. The nursing staff was made up of angels. =) Long story short...my "baby" is now 10 yrs old and as active as I could ever hope for. If you ever want to talk more about it, please just send me a message. I hope I was able to at least give you an "upside" to what the options could turn out to be.
Have a great day
L.

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