Hi there
I’m looking for stories of hope please.
Beautiful 3w old baby had severe episode of undiagnosed SVT, ended up on ECMO as meds weren’t controlling. Unfortunately he had a blood clot in one of the arteries in his neck during ECMO. They managed to get him off ECMO and continued on ventilator and heparin. He’s had seizure activity now controlled with anti epileptics. Unfortunately they found a bleed on the brain yesterday likely due to heparin. We’ve been told he will have sustained some brain damage but the extent and impact of this won’t be clear until he reaches 1 year old.
We’re desperately looking for stories of hope and support.
Thanks so much