Does anybody else have a baby with Digeorge Syndrome or TOF?

advancedharmony

Hi my name is Abby. I'm from south Texas and I just found out that my 3rd baby girl has Digeorge Syndrome. I would like to talk about it with another mother that has a baby or a child with the same thing. My baby's name is Annabelle and she's 13 weeks. She also has TOF so she'll be needing heart surgery in a few months.

realisticdreams

The geneticist & pedi thought P had Digeorge Syndrome, but she tested negative.  

I'm sorry I can't be of more help, but I have used this site before and it can be helpful if you want to communicate with other parents with the same dx.

https://www.madisonsfoundation.org/ 

gremaud07

My son was diagnosed with DiGeorge after he had heart surgery a three weeks old.

He has had some milestones that he has had struggles with and others he has surpassed. He has to be on calcium and vitamin d since his thyroid doesn't function normal.  Just been diagnosed with low tone of the mouth and feet.  He wears inserts to help with his low tone and recieves speech therapy every other week as well as in an early intervention program to help.....

If you want to talk or have questions you can email me at gremaud07@yahoo.com

advancedharmony

Thanks for your reply. I'll email u soon with some questions.