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Old 01-02-2005, 08:49 PM   #1
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Debbie04 HB User
Children born with heart defects

I am trying to find someone who has the same situation as me or knows of someone like me. I have had 4 children. I lost my first child at 8 wks. of age. Supposedly heart defect, Dr. couldn't really be for sure. I had my 2nd child checked right after birth to make sure he was ok. They said he was. My 3rd child was born with a loud murmer, he had pulmonary valve stenosis. My 4th was checked and said to be okay. Well, my 2nd child that was checked right after birth and given the okay has just been found to have aortic valve insuffenciency. I don't understand how this was not seen at birth. He has just turned 13. It was by some freaky ache he was having in his side and chest that I got it checked out and this was discovered. The pain had nothing to do with his heart. We've been living for 13 yrs. thinking everything was okay. Now I'm worried about my 4th child who was also given an okay at birth. I'm gonna have him rechecked because as odds would have it he probably has a defect also that wasn't found. Has anyone else experienced such in their children. I should also mention that all my kids are boys, I don't know if that has anything to do with it. It just breaks my heart. Also if anyone has had the aortic insuffenciency since birth have you had any problems and if so how old were you when they started? Sorry this was so long, just trying to get some answers.

 
Old 01-02-2005, 11:20 PM   #2
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Excelsoir HB User
Re: Children born with heart defects

Only a Paediatric Cardiologist can really give you the details you want. I can fully understand your concerns, and wish I could help. I can tell you that there is much more sophisticated imaging equipment available now, and other diagnostic tests which are being developed and improved all the time.A Specialist Unit should have the necessary machines and expertise to help you. Hope you can find out more. Let us know.
Regards, Excelsoir

 
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Old 01-03-2005, 01:20 PM   #3
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Kitten1980 HB User
Re: Children born with heart defects

Debbie, first of all I want to express my sympathy for the loss of your child (((hugs))). I would think that it would be rather encouraging in terms of long-term prognosis that the 13 year old never had any signs, symptoms, or troubles. As Excelsoir said, you'd really have to discuss your concerns with a pediatric cardiologist to get the answers you're looking for in anything more than general terms. But just to let you know that a diagnosis of a cardiac defect doesn't have to be a worst case scenario - they knew I had problems at birth, and told my parents I wouldn't live to be a teenager. I'm 24 now and don't have any serious problems to speak of. And medical technology has improved a *lot* since the eighties. I'll keep you and your children in my thoughts and prayers ((hugs)).
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Old 01-04-2005, 07:26 AM   #4
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hypokelly HB User
Re: Children born with heart defects

Dear Debbie,
First, I would like to say I'm so sorry for your loss of your first child.
I am a parent of a child with congenital heart disease and I understand your concerns.My middle child(daughter) has IAA,AP window(both repaired),but might be getting a pacemaker in the near future due to heart block.When I got pregnant with 3rd child(boy) had a level2 ultrasound(echo of fetus's heart) He is fine.I sometimes question whether my 1st born(boy) should be checked.
My brother passed due to heart condition, but that was 40yrs ago(when cardiology were pioneers)Our mother came in contact with measles while pregnant apparently causing his condition.
I just recently found out I have mitral valve prolaspe, so there is quite an lot of heart history .
I have to agree with Kitten about no signs and symptoms are a good indication your sons are healthy, but for their sake and your peace of mind follow up and get your sons seen by a doctor and tell him your concerns.
I read up a little on aortic valve insuffientioncy, It sounds similar to MVP.Is your son being followed up with a cardiologist?
Take care,
kelly

 
Old 01-07-2005, 06:53 AM   #5
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Debbie04 HB User
Re: Children born with heart defects

Thanks so much everyone for your replies and thoughts and prayers. I really appreciate it, and I will also remember you and your loved ones in my prayers as well. Kitten, it really makes me feel better to hear how fortunate you have been considering what the Drs. thought at birth. I am so glad that you have no problems now. I have to take my son back to the cardiologist in 6-12 months to be rechecked. He said since we didn't know anything about the problem from birth he needs to recheck to see if the leakage is getting any worse or about the same. Please pray for my Jeremy that it doesn't get any worse. I believe in the power of prayer. Also Kelly, I will remember your little girl in my prayers. I hope everything goes okay for her. A friend of the family just got a pacemaker put in and she is doing fine and I know your daughter will also. Take care.

 
Old 01-07-2005, 03:21 PM   #6
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Kitten1980 HB User
Re: Children born with heart defects

((((((((((Debbie))))))))))) and hugs to Jeremy as well, I am all too familiar with how scary the next 6-12 months will be waiting to find out what's going on. I'll certainly keep you in my prayers. Please keep us posted on how he's doing okay.
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"Now faith is the substance of things hoped for, the evidence of things unseen." ~ Hebrews 11:1 ~

 
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