Special Needs

Heart moms: Question!

This was talked about briefly on the Down syndrome board I post on.

Lauren was born with a complete AVSD, repaired in March. I always thought that congenital heart defects could be genetic but were often a "fluke". And I thought that Lauren's heart defect was strictly because she has Down syndrome. I understand at which point in the embryonic stage endocardial cushion defects occur and all that jazz.

But then someone said that it's still considered genetic and that any future kids would have an increased risk (like 10%) of having a CHD. Does anyone know if this is true? I'm curious. I don't really want to set up an appointment with the genetic counselor for this, I'm mostly just curious.

Here's the kicker- I have mitral valve prolapse. I fount out after some chest pain and an abnormal EKG. I used to take a beta blocker but it made my blood pressure way too low. In recent years I've only been symptomatic while pregnant and rarely any other time.

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Re: Heart moms: Question!

  • Lurker here.

    My son was born with a small murmur (ASD) which has since closed on it's own. My SIL and her maternal aunt both have the same murmur but theirs have not closed. Both are minor though (just need antibiotics when going to see the dentist).

    I mentioned the family history at his first appointment with his cardiologist at Children's in Boston and the doctor did say that there is a slight increase of any future children having a murmur because of the family history but he did not mention any statistics/numbers. 

    The doctor also said the genetic links haven't really been proven yet but since 3 people in my Dh's line now have the same murmur that there clearly is some genetic component involved.  

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  • Im interested to know as well. My middle son had a murmur and it went away. Lizzie was born with a large PDA which closed and a VSD and a PFO. Both are still there at 3. When we decided to try again I was told that I would have to see a specialist when we did concieve to have the baby's heart checked b/c we were at risk for a heart defect, same odds as having another baby with Ds.
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  • Thanks ladies :
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  • From my experience it depends on which doctor you talk to. DS's cardiologist says fluke for us, his surgeon says that our normal risk of 1 in 100 goes up to 3 in 100 for future kids.  I asked the surgeon about this, and he said really all heart problems are genetic, however, there are only a few that they actually KNOW the genetic link.

     DS was born with a large VSD that had to be surgically repaired.  I know there are numerous people in my family who have had children with murmurs that went away, myself included.  However, for most of us we don't know if they were innocent or possible VSD's or ASD's that closed on their own.

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  • imageimeltice:
    From my experience it depends on which doctor you talk to.nbsp;DS's cardiologist says fluke for us, his surgeon says that our normal risk of 1 in 100 goes up to 3 in 100 for future kids.nbsp; I asked the surgeon about this, and he said really all heart problems are genetic, however, there are only a few that they actually KNOW the genetic link.
    nbsp;DS was born with a large VSD that had to be surgically repaired.nbsp; I know there are numerous people in my family who have had children with murmurs that went away, myself included.nbsp; However, for most of us we don't know if they were innocent or possible VSD's or ASD's that closed on their own.


    Very interesting! It makes sense that different doctors would have different opinions. We see Lauren's cardiologist next week, I'll have to ask for her opinion.
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  • I do believe in your case and in ours (Tetralogy of Fallot with Absent Pulmonary Valve and DiGeorge Syndrome), the syndrome causes the heart defect. I would look at the statistics for the syndrome, not the heart defect. In our case, neither my husband or I had the syndrome when tested, so they said our chances of having another child with the syndrome and heart defect were the same as the general population. But, they also said that if you have a kiddo with a heart defect only, then you are at a slightly higher risk for having another. So instead of 1%, you would have a 3% chance. 

    We have since had a healthy baby girl who is now 1 year old. :-) 

     

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  • DD was born with an ASD (atrial septal defect), primary pulmonary stenosis, and is being monitored for Long QT. I am having a fetal echo in a month to check on this LO. We're going to CHOP for a second opinion next week, and will ask more questions about the chances that my next LO will have CHD.

    Eta: to clarify 

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  • DD#2 was born with a VSD and Coarctation (both had to be repaired at 9 days old) but to our knowledge it doesn't run in either of our families. The doctors told us that technically our chancs increase but that it's still such a small chance of it happening again. They did tell me that I would be able to have a cardiologist do an echo on the baby if I were to get pregnant again just b/c we didn't know about DD's problems until she got very ill a few days after she was born.
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