anyone with TOF, any CHD or had OHS? kinda long, sorry

nillian10

My DD was born (at 37 weeks gestational age) due to IUGR with Tetralogy of Fallot on August 8! Wow, where has the time gone already??
Luckily she was born with enough oxygenated blood getting to her lungs, and didn't need corrective surgery right away. Her echo within her first hour of life showed a pressure gradient across the pulmonary valve of 14 (fairly low compared to most with TOF). We had her monthly cardiologist appointment last Thursday, and the pressure gradient during her echo showed a number of just over 100. Huge change. We got sent to CHOP .. but considering she isn't showing many other signs of lacking oxygenated blood, they want to wait for her surgery. Until she is just a bit bigger & stronger.

Originally they gave us a time frame of 4-6 months of age. But with the valve thickening within her 1st month of life, they are considering moving the surgery...depending on how DD is doing. 

Thursday was a scare for us, and we weren't ready. Mentally, emotionally, financially. As we thought we had a little more time.

Now, I'm just trying to prepare myself a little more for what's to come. 
Can anyone share their stories, whether it's just OHS or TOF or OHS with TOF? I know every case can be different. But overall, we go through the same emotions and feelings. I need some guidance through all of this. I'm so scared and nervous.

Thank you.

Mbitner

I don't have experience with this.  But, I wanted to say that our LO's share a birthday and GL!  

JOEBunny

My nephew has Tetrology of Fallot.  He is 4 now.  He had surgery at 1 day old and a "complete" repair at 8 months.  He has done very well and has no additional problems.  He will have surgery again in the next year or two most likely, and obviously be watched by a cardiologist through his life, but he is a happy, healthy little boy who runs rings around his older brother and sister.   I would ask your Cardiologist for referals to other families in your area who have been through this.  I know that talking to them was hugely helpful to my family. 

jwilkins1

You might want to take a look at this:

https://www.zoloft-lawsuit-center.com/Tetralogy-of-Fallot.html