CDH and Micro deletion of 16p 12.2

Martha - posted on 08/25/2016 ( no moms have responded yet )




I am GiGi (grandmother) to sweet Thomas who was born a month early with Congenital Diaphragmatic Hernia, Congenital Central Hypoventilation syndrome and Micro deletion of 16p12.2
Born on January 11,2016
He is adorable. The hernia was repaired right away. He is on a ventilator and has gtube. He is not expected to ever get off vent while sleeping. The team is working towards weaning him off during hours. I'm open to any information suggestions support etc.
Thanks a bunch

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