cardiac rhabdomyoma or EchoGenic IntraCardiac Focus?

In an 18 week ultrasound our technican found our baby has SUA in the umbilical cord.  On our 24 week ultrasound, they identified a very small 1-5mm mass in the apex of the left ventricle (very safe place to be) saying it could be a cardiac rhabdomyoma, fibroma or a EchoGenic IntraCardiac Focus.  They had to look 3x over because of it hiding so well and so small.  I am stressed to the gills with this....

Because we lost a child in our previous pregnancy (she had 2 cardiac masses in her left ventricle which were on the actual left ventricle wall and septum), they can't ignore the history and are speculating that this may be the initial signs again of cardiac rhabdomyomas leading to Tuber Sclerosis but they have confirmed they cannot factually say this with the information provided.  Both my husband and I were tested for any Tuber Sclerosis mutation and we have none -- it seems it was a new mutation and there is the possibility of something called gonadal mosaicism where other sperms or eggs could have been affected (1-2% chance)...

I read some many folks on the internet saying they had SUA and an EchoGenic IntraCardiac Focus -- hence my thinking this sounds more like this is what this is.  we had our screening tests and downs etc. were 1 in 20,000, but apparently now reduced to 1 in 300 because of potentially 2 soft markers.  My husband says forgo any amnio and they are not recommending it but do I do it for a piece of mind?

What can I do to ease my mind?  What does this sound like?  This will be the longest next 3 months of my life.  

[Kathys96]

Hi Hope - I definitely know what you are going through. My doctors found a cardiac rhabdomyoma growing in my baby's right ventrical at week 28, it has not caused any harm to her heart what so ever, thank gosh.  It looks like my husband has TSC since he definitely has all of the skin markings of the genetic disorder, we are currently undergoing all of the great testing with my eldest daughter and my husband and it has been a nightmare pregnancy. I am currently due on 9/24 and am scared to death of her being born with tubers in her brain. My doctors originally found that my baby would be born with clubfeet (not associated with TS) at 20 weeks gestation so I went ahead and took the blood test as well, your numbers are great mine were more like 1/2000, but I was also born with clubfeet so I decided agaisnt the amino because of that small chance of losing her..she is growing very well and Im hoping for the best possible outcome next week but my suggestion if it means anything what so ever is take the amino so that way you are 100% sure that the baby will not be born with something more serious. I regret not taking the test because now I am extremely nervous and trying to stay positive because of my family, you would have to request the TSC test since that is not a part of the original list of testing done. Regardless, good luck with your pregnancy because I know what it feels like to be terrified with the health of your unborn child, many endless nights of crying and suffering internally and all I can do now is face my child's outcome on the 24th...good luck!

[Hope375]

Hi there, I did not get this until now.  

Thank you so much for your response.  I am sorry to hear you too are having a difficult time with this pregnancy and I will pray that everything turns out.  Good luck on the 24th and let me know if you feel comfortable how everything turned out.

It sounds like a fetal MRI would tell you if the baby is born with tubers in the brain but I am really scaird to do it 1) because ignorance can be bliss but 2) when my husband had his MRI he said it's very noisy and for sure it scares the baby.  

Since all my husbands organs and skin was analyzed and no TSC, I have nothing external or DNA related either but I will go get all my organs checked out to be sure -- it is just so strange in our situation to have this happen 2x with no signs of anything.

In a way I wish i got the amnio but now it's too late.