Anyone have a child with DiGeorge or TOF?

Question

The diagnosis of TOF with pulmonary atresia is absolutely for sure, and I’ve come to terms with that! 
My baby has about a 1/4 chance of having DiGeorge syndrome. I don’t know anyone that has this syndrome as far as I am aware and was just wondering if anyone knows or has a child with this and can share some info on their babe :) 
I’m 23 weeks and just want to be as ready as possible before shes here.

Answer

My best friends son has DiGeorges syndrome. Well, it's actually 22q selection syndrome. Same thing. Her son is 2 years old now and the most amazing little boy 😍
She went through a lot when he was first born. He had failure to thrive and they thought he was being neglected. CPS was constantly around until she pushed hard for genetic testing. 
I'm not sure where you are in the country, but there aren't many places that specialize in this. Most doctors have never seen it. I'm in Michigan, my friend has to drive to Ohio. But there are a lot of fresh start programs through your state that can help you every step of the way. 
Message me if you would like and I will happily reach out to her or answer any questions I can. I'm in no way and expert, but I've been by my friends side every step of the way through this. 
She also found a lot of amazing groups on Facebook and reddit that have helped her immensely.

Anyone have a child with DiGeorge or TOF?

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