The hardest part of parenting
The longest night I had was 2 days after my son was born, that was the night we chose to remove life support On February 15 2018 I went into preterm labour, my pregnancy was awful for me, but all the scans showed a healthy big baby. When I went into preterm labour he was born really sick but they had no clue what was going on with him, he was covered in hundreds of small spots but there were other worse things going on that we had no clue about. They immediately took him to a bigger hospital and told us we would be there for a long time but he was stable. The morning of February 17 we got MRI results which showed my son suffered a massive hemorrhagic stroke from a ruptured brain Arteriovenous malformation, was in heart failure from a liver Arteriovenous malformation, his liver was also full of hemangioma and his skin was covered in thousands of hemangioma and had a never reported genetic mutation. The stroke had destroyed his right temporal lobe and with the heart failure, hemangiomas and other problems he was in really bad shape, with the high likelihood of profound disability or death even with intervention. My husband and I made that awful choice to let him go peacefully. So February 17, we pulled his life support and had memory photos taken and waited. But my son is the strongest kid I know and fought hard, by the end of the that day he had stabilized and was surprising everyone.He has had to have multiple life saving brand new surgeries and he has some disabilities(mild cerebral palsy, partial vision loss and speech delay) but he is a fighter. He will probably need more surgeries in the future but we will take those as they come. We have been told that he is super rare in the medical world, his 3 conditions are like being struck by lightning 3 times.I will never forget that absolutely breathless gnawing devastation of that night, it has put life into prespective to me.
