Makenna is 17 days old now I found out the test came back when she was 12 days old that she has DiGeorge syndrome. She has an app with a genetisist Sep 2nd and a heart ultrasound tomorow the 25th of August. As of right now we have no clue how mild or severe she has the syndrome but we arehoping and praying for the best.

My son, Triumph is one remarkable baby boy. He was diagnosed a few days after birth with DiGeorge syndrome. He spent 69 days in the NICU (had CHF among other problems). His G-tube/fundo was placed just over a month after he was born. He was diagnosed with lung disease @ 3 months and went to heart surgery at the same time for a VSD, ASD, and vascular rings. His base line at home (when we make it there) is 1/4 liter of oxygen. He, in addition to Digeorge syndrome, has craniosynostosis and will… Continue

So my 2 year old daughter MaKennah is going to have her Submucus Cleft Palate repaired in the next few weeks.....I was told by them that it is a big surgery cause her airway and stuff are going to swell and that will be hard because she already has breeathing problems, has anyones child had this done and what was your experience?

Hello I knew to all of this and I was wondering if anyone or anyone's child has the same problem...Im 24weeks along in pregancy and have just been told that our baby due in Sep has DiGeroge and tetralogy of fallot with a absent pulmonary valve and not sure whats ahead of me!!! Any information or help would be much appreciated.... I not sure what to expect with both of these combined!!!???

Happy mother's day to all of the special mommies out there. I hope that everyone has a great day!!!