tetralogy of fallot

Jeremys-Mommy
By Jeremys-Mommy Latest Reply 2011-12-19 00:16:58 -0600
Started 2011-11-15 11:43:48 -0600

Hello everybody!
My name is Sarah and I have a 15 month old little boy with tetralogy of fallot. He has had 4 heart surgerys already, one being open heart reconstruction, I was just wondering if anyone else had this or have kids with this? I feel like im the only one going through this. And have not meet anyone else that has it or has kids with it.


2 replies

KC2004
KC2004 2011-12-19 00:16:58 -0600 Report

Hi Sarah!
My Name is Nicole, I have an 8 month old Daughter who has TOF. We found out while I was pregnant with her, but were honestly still floored after she was born.
She has had 3 open heart surgeries so far (2 shunts & 1 full repair). She currenlty has 2 VSDs left, 2 blockages, and enlarged muscle. They are hoping that most of this will resolve itself before she needs to have her conduit changed. She currently has a size 12 mm conduit and will need to be moved up to a bigger size so that when she is older they will (hopefully) only need to do a cath to change the valve out.
We also feel like we are the only ones going through this. Not only medically, but physically, mentally, and financially.
I trying to watch the video that is posted, but I only got to the first cut & had to shut it off (My babies surgery was performed on Nov 2nd, so it's still pretty fresh in my mind).
If you would like to talk further, Please don't hesitiate - I'm always looking for more people to talk to!
Question for you… was he diagnosed with anything else? Chromosone, congenital, etc?

HeartHawk
HeartHawk 2011-11-22 00:28:18 -0600 Report

Jeremys-Mommy,

While TOF is rare the prognosis is good after surgical intervention. You can find quite a few good videos at youtube and here is a good one you can access through HeartConnect to get you started.

http://www.heartconnect.com/videos/75-total-correction-of-tetralogy-of-fallot

You can also find some useful info to get you up to speed in this article

http://www.heartconnect.com/news-articles/456-tetralogy-of-fallot

This site may also be a lead for finding other families dealing with TOF.

http://community.babycenter.com/post/a24749133/tetrology_of_fallot_with_pulmonary_atresia

HH

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