Tetralogy of Fallot

[rachch]

I am a preganant woman expecting a baby boy end of this Sept. However my recent antenatal scan revealed that my baby is having heart defeat problems and the findings are consistent with that of Tetralogy of Fallot (Large vsd - perimembranous outlet ; Aortic override, slightly more than 50%; Aorta / pulmonary arterial disparity (aorta > 2 x the size of pulmonary artery). The doctor mentioned that this is what people called as "Blue Baby".

As this is my first baby - I am really getting shock and nervous about this news. I was told there might be some other problem associated with the other organs of my baby and hence I have done the amneocentesis test & the result showed that no cromosom defect detected.

I'd really like to know the following:
- What is the survival rate of the corrective surgical? How effective is it?
- How do I take care my baby? Is there any special medical equipments that I can use at home in case any emergencies happened to my baby?
- Is there anything I could do to make my baby more healthier?
- How is the life expectancy affected, both thru childhood or in the long term?
- Will you advise I still deliver the baby naturally?
- Will you advise me to still do cord blood banking for my baby?
- How accurate is the amneocentesis test result?


Thanks ...I am desperately needing advise..

[mau789]

Now 13 I have a son who has tof diagnosed from birth he had corrective surgery at 6 months the hole repaired, artiery widened, and although he has had a leaky valve which doctors say is normal for tof has been healthy all the way through his 13 years. In november of 2007 he had the valve replaced and artiery patched after being out of breath for some time, although he had a rough time in hospital opened up 3 times he is on the mend now just needs physio once a week he is back to school and doing ok, hope this helps a little bit because i know how hard it is you just want your baby to be perfect and healthy.mau

[va_tony]

I have a granddaughter who was born with severe ASD and VSD.   After birth, she was listless and "failing to thrive". Although her mom and dad (my son) were very apprehensive, she was operated on successfully at one month of age at UVa Pediatric Surgery Center and is now doing great at 3 years of age. If I showed you a photo of her and her three sisters, you would be unable to pick out the one who had surgery. She's perfectly healthy and you can barely even see the chest scar at this point. Thirty years ago such infants would have just died before they reached one.  But now the pediatric surgeons have the skills and tools to make such operations routine.

Best wishes

Tony

[Awake and Unafraid]

I'm bumping this back up hoping someone has answers for you.

[Awake and Unafraid]

After reading again what I wrote above about the accuracy of the test, I thought it sounded as if I were trying to discourage you from a positive result on your amnio test.  I would never do that.  As surgirl wrote, it is 99.9% accurate.  I know what it is like to have a baby born with very serious heart defect.  I also know what it is like to have a baby born with Cleft Lip and Palate.  Having been there myself, I can certainly sympathize with you because I know how freightening it can be.  I sincerely hope you find the answers you are looking for.    

[surfgirl]

I am so very sorry to hear this.  I cannot imagine the pain you are going through.  I cannot tell you too much about TOF, but I wish you my sincere sympathy.  I can tell you about amnio..........it is 99.9% accurate, but as you know, it only detects chromosomal defects, and will not discover defects in other organs.  A sonogram should be able to do that.

[Awake and Unafraid]

Google "Tetralogy of Fallot S", there is lots of information there.

"How accurate is the amneocentesis test result?"

I know of someone who was told that her baby was Down Syndrome and yet she delivered a perfectly healthy baby.