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mamabear
LIF Adult
Member since 3/08 4539 total posts
Name:
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need some positive stories about babies with holes in their heart
My precious little 9 month old baby girl was just diagnosed with a hole in her heart. ASD. For now, they are just monitoring it, but if it gets bigger or causes any problems, the hole will have to be closed.
I am so sad for my little girl. I know most likely she will be fine, but you want your baby to perfect and it breaks your heart when there is something wrong.
We did not realize until we starting going over our history how many heart problems run in our family on both sides. DH's brother just had a stroke this year at 39 years old, and it turns out he had a hole in his heart, which is what caused the stroke. Apparently, he was also told as a kid that he had a heart murmur and it was no big deal, but in the end it was. He has permanent problems from the stroke. very sad.
Anyway- I am very glad I took my daughter to the cardio. Her ped had said it was "innocent" and we didn't have to take her right now, but it turns out it is not an "innocent" murmur, so I am very glad we took her and she is being monitored by the right doctors.
Message edited 10/14/2010 5:35:48 PM.
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Posted 10/14/10 5:26 PM  |
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nbc188
Best friends!
Member since 12/06 23090 total posts
Name:
C
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Re: need some positive stories about babies with holes in their heart
 I don't know what exactly ASD is...but I'll tell you my story.
When I was 18 months old my pediatrician detected a heart murmur. Went to a cardiologist, discovered I have a bicuspid aorta with stenosis (basically, your aorta should have 3 cusps, in my heart, 2 are fused together so I only have 2 cusps). I was monitored every year from then on with simple tests (EKGs, echocardiograms). Couldn't play contact sports, had to take antibiotics when I had dental work or any surgery, etc.
I'm in my 30s now and all is still the same...monitored every year, it has gotten progressively worse and I'll likely need surgery in the next 10 years....but I am fine. Was able to have 2 healthy, uneventful pregnancies (monitored more closely due to my heart) and 2 very easy deliveries.
Hope you find all the information & support you need. 
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| Posted 10/14/10 5:33 PM |
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jerseychick
LIF Adult
Member since 4/09 3923 total posts
Name:
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Re: need some positive stories about babies with holes in their heart
My 3 month old has a VSD (a hole in the ventricular septum, rather then the atrial). They run in my family. My 4.5 year old niece had one that closed on it's own within the first year. DD's has shrunk since birth as well. I am  that it closes as quickly as my niece's did. The cardiologist we have been seeing told me that even if it does not fully close, she will be OK to do sports, etc. I know it is a scary thing to hear, but many times, they close on their own. I hope this is the case for your daughter!! If you have any questions or want to talk, feel free to FM me
Edited for spelling
Message edited 10/14/2010 5:39:04 PM.
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| Posted 10/14/10 5:36 PM |
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hbugal
Lesigh
Member since 2/07 15928 total posts
Name:
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Re: need some positive stories about babies with holes in their heart
My eldest daughter has an ASD...
She will be 17 in Januray....
When she was born it was 4mm....
When it was last checked it was 3mm. So, although it hasnt closed up, proportionately it has gotten smaller. As things stand she hasnt required surgery to close the hole. There is no left to right shunting (no blood flow through the hole) so it isnt putting any strain on her heart or lungs.
We have an appointment in November to see if anything has changed. The only reason why we are currently exploring the idea of closing the hole is b/c, in the future, we may be looking to have elective surgery done. We arent sure if the hole would need to be closed or not.
It's scary, I'll admit, but as far as "holes" go it's about as "nothing" as these things can be...
Please feel free to FM me any time...
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| Posted 10/14/10 5:57 PM |
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ChrisDee
My Girls
Member since 11/06 9543 total posts
Name:
Christine
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Re: need some positive stories about babies with holes in their heart
DD#1 was born with a VSD and an ASD. They found it they day she was born. I was so scared, so I know how you feel. They told me that one of them(cant remember which) was likely to close on its own in the 1st year and the other would not. They said she would just have to take precautions when getting a cut of any kind, going to the dentist or any medical procedure. They said that she would live a normal life.
Well... at her one year check up at the cardiologist, they were shocked that they BOTH closed. They even called in a second Dr to try and find it and he agreed it was gone. She does have a murmer but is totally fine!
She is 9.
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| Posted 10/14/10 6:08 PM |
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MrsRbk
<3 <3 <3 <3
Member since 1/06 19197 total posts
Name:
Michelle
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Re: need some positive stories about babies with holes in their heart
My cousin was born with a hole in her heart. She had surgery as a newborn to correct it. She is now 29. She does have to periodically see her cardiologist, but she lives a very normal life.
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| Posted 10/14/10 6:52 PM |
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CarlieJLD7
I love my daughter!
Member since 7/07 3061 total posts
Name:
Carlie
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Re: need some positive stories about babies with holes in their heart
Posted by MrsRbk
My cousin was born with a hole in her heart. She had surgery as a newborn to correct it. She is now 29. She does have to periodically see her cardiologist, but she lives a very normal life.
My Cousin too, she also had surgery as a newborn to correct it, and she is now 36... and VERY NORMAL life...
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| Posted 10/14/10 6:58 PM |
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dawnygirl25
Growing up soo fast..
Member since 1/06 14917 total posts
Name:
Dawn
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Re: need some positive stories about babies with holes in their heart
just wanted to send you hugs. Im sure your DD will be OK.
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| Posted 10/14/10 7:44 PM |
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mamabear
LIF Adult
Member since 3/08 4539 total posts
Name:
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Re: need some positive stories about babies with holes in their heart
thank you everyone. i really appreciate the responses and the positive stories. we love our babies so much and never want them to have to face anything bad, ya know.
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| Posted 10/14/10 9:02 PM |
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Re: need some positive stories about babies with holes in their heart
My sister had a large ASD. It was quite significant.
She had it closed at 6. She had open heart surgery a week after her 6th birthday.
She is a completely healthy and active teenager now. Besides the scar, you would never know she had a problem!
Many
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| Posted 10/14/10 9:05 PM |
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CrankyPants
I'm cranky
Member since 7/06 18178 total posts
Name:
Mama Cranky
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Re: need some positive stories about babies with holes in their heart
no experience but wanted to send you and
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| Posted 10/14/10 10:04 PM |
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dgirl
LIF Adult
Member since 5/07 1079 total posts
Name:
Danielle
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Re: need some positive stories about babies with holes in their heart
DD was born with a VSD that was 4mm. We took her to the cardiologist for regular monitoring and it has closed on its own. She is 15 months.
We were flipping out when we found out about it but its a lot more common than you think and a lot of times they close on their own.
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| Posted 10/14/10 10:13 PM |
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mamabear
LIF Adult
Member since 3/08 4539 total posts
Name:
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Re: need some positive stories about babies with holes in their heart
Posted by munchkinfacemama
My sister had a large ASD. It was quite significant.
She had it closed at 6. She had open heart surgery a week after her 6th birthday.
She is a completely healthy and active teenager now. Besides the scar, you would never know she had a problem!
Many
Glad your sister is ok now! Do you mind if I ask how large your sister's hole was? Did it grow over the years? Was the surgery awful?
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| Posted 10/14/10 10:35 PM |
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nrthshgrl
It goes fast. Pay attention.
Member since 7/05 57538 total posts
Name:
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Re: need some positive stories about babies with holes in their heart
Both my sister & I were born with "holes in our hearts". They both closed up as we got older.
This is back in 1964 & 1968. Think of how crappy medicine was back then! We're both good!
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| Posted 10/14/10 10:46 PM |
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yankinmanc
Happy Days!
Member since 8/05 18208 total posts
Name:
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Re: need some positive stories about babies with holes in their heart
My very close friends son had a hole in his heart at birth and had open heart surgery at something like 6 weeks (not sure) and he is now 5. He is a very normal kid, very rambunctious and happy. Very popular, all the other kids love him. He is a lovely boy! I have some photos of him in my album if you look there. He is fine and he only sees a doctor once a years, there is no special treatment needed 5 years later! He is awesome!
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| Posted 10/15/10 7:18 AM |
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Sunday
In love with a boy named Luca
Member since 6/09 1799 total posts
Name:
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Re: need some positive stories about babies with holes in their heart
I have a friend that was born with one. For a few years they kept checking but nothing ever came of it. Now we are 30 and she is perfectly fine.
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| Posted 10/15/10 8:39 AM |
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waterspout4
My loves
Member since 5/06 19150 total posts
Name:
Kelly
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Re: need some positive stories about babies with holes in their heart
My niece was diagnosed with it at birth. They monitored it through her life and when she became a teen they said that if she ever got pregnant she would be high risk. But when she turned 18, they said she would have a normal PG. Not sure what changed, but it was obviously for the better.
In high school she was a swimmer and last year she got married. She lives a normal life.
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| Posted 10/15/10 8:50 AM |
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