My baby boy was born on New Years day at 3.45am. He was the third baby to be born in the Manawatu and weighed 8.4 pounds. 24 hours after birth, right as he was getting ready to come home, His blood sugars dropped and he was taken away to the NICU ward. After a few hours, it was suspected that his little heart wasn’t pumping enough oxygenated blood around his body and we were flown down to Wellington. He spent 4 hours in Wellington and we were then flown to Auckland. My little boy was diagnosed with critical aortic stenosis which means there was a severe narrowing above the aortic valve which made it hard to pump blood through and around his body, and hypoplastic left heart syndrome which means the left side of his little heart was much smaller than the right. In his short 13 weeks of life, he underwent 2 open heart surgery’s, a stroke which caused a brain bleed, surgery on his head to drain the brain bleed, and a blood clot which caused his little intestines to get blocked. He had an incredible amount of strength and he fought with all his might right up until he couldn't anymore. I spent the entirety of his short life, by his side in hospital until the morning that he passed away in my arms. I would love to connect with other mums who have experienced infant loss, I feel completley lost and isolated. We live 6 hours away from the hospital that we spent 3 months in and now that im back home it all feels so surreal. Struggling to grasp the reality that is here. Life back at home is as usual. Because of covid restrictions, it meant that i was alone with my son in hospital and now coming back home to my partner and our two other kids its almost as like for them, nothing ever happened and im alone in my head trying to make sense of everything and aching to hold and see my baby.

Hi Sam -- gosh, your experience sounds scary and awful and I'm so sorry it brought you here. While there are a lot of differences in our stories, we have some similarities, too. My son Charlie was full-term, born at 41 weeks. We had some unexpected complications during delivery and he was in the NICU for 6 days before passing. It was, is, gutting. One of the most difficult parts for me has been returning to life 'as usual' when I know things should be so different. They ARE different. It's hard to rebound back into a life that looks mostly untouched but at the same time feels as though a bomb went off and touched every part of my life. I sometimes feel like I should dye my hair, change my name, etc. to match the sense of change I FEEL but no one really sees.

I wish I could give you a huge hug. What was your son's name?