1 lung 1 kidney #goldenhar

Alexandra - posted on 07/15/2015 ( no moms have responded yet )

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Hi my identical twin son has been born! He has been born and diagnosed with goldenhar syndrome. He has so many things wrong, so here is the list. Born with only 1 ear so half deaf. Break in c7 (neck) 1 Lung and 1 breathing tube as his heart didn't properly form on 1 side. 1 kidney again did not even attempt to form on other side. Cleft palate, hernia, pfo.. Diagnosed goldenhar and under 4 hospitals. Does anyone come close?? When we mean 1 lung, 1kidney we mean it! Not even a tiny bit grew!!!!? Anyone in a similar situation. Outcomes? We were told he woul die but now unsure? Xxxxx I am getting depressed just wanna know if kids out there come close xxx

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