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wymanjg
@wymanjg

Posts: 1
Joined: Mar 25, 2016

My son was diagnosed with tetralogy of Fallot, is 8 months old.

Posted by @wymanjg, Mar 25, 2016

My son was diagnosed with tetralogy of Fallot, is 8 months old and has never had any symptoms what so ever. From what Ive read this disease kills. I find it hard to believe there is anything wrong with my son, but I don’t want him to go without a surgery that will save his life. The doctor who wants this operation misread the echocardiogram thought my kid was sickly then drags us down to get a better one done and after telling us he had three holes in his heart now tells us he has this other thing going. Which is understandable the equipment isnt perfect. But with this disease i feel like he should have mentioned how my kid could die within a couple years but he didnt. He didnt even act like it was a big deal he just wants to operate. So Im wondering about misdiagnoses or anyone with any experience with the disease who could offer their input. Thank you

REPLY

Welcome to Connect, @wymanjg.
How worrisome. I can’t imagine dealing with this diagnosis as a new mom, as well as several instances of misinformation.
Here is some information about tetralogy of Fallot from the Mayo Clinic http://www.mayoclinic.org/diseases-conditions/tetralogy-of-fallot/care-at-mayo-clinic/why-choose-mayo-clinic/con-20043262.

I’d also like to connect you with adult survivors of tetralogy of Fallot: @ricke62 @pfsinger and @4n6champ who started a discussion here https://connect.mayoclinic.org/discussion/tetralogy-of-fallot/.

Rick, do you have some experiences to share with @wymanjg? She would really benefit from hearing from someone who has been there. Thanks

My twin granddaughters had the same heart problem at birth, both had surgery at Children’s hospital Philadelphia days apart at 4 months old. Both 11 now, swim, gymnastics, dance, checkup every year at Children’s and everything going well.

Jimmy Kimmel recently revealed his son Billy was born with tetralogy of Fallot with pulmonary atresia. http://mayocl.in/2pukyEU

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