I didn't know anything was wrong during the pregnancy. She was growing well and scans looked fine and, apart from a horrific birth, everything seemed normal.
They put her to the breast and that's when things became bad, she went blue all over. They took her away and I didn't see her for 8 hours. No Drs or midwives came to see me or tell me anything and eventually I had to get really firm and demand some answers. That was when they mentioned the first of her heart conditions. In NICU someone came and told me it was very serious and we were waiting for a transfer team to take us to BCH. BCH were amazing and saved her life with the surgeries.
She has a huge fabulous and supportive care team with cardiac, renal and developmental. She's now 3 and a half and although she has a lot of complex medical and developmental issues along with a suspected syndrome (awaiting genetics) she is the happiest girl in the world
She can't stand, walk or talk but boy does she smile and laugh.