“To us, there was never a question. In room 117, he came into this world. Crying, alive, and doing it on his own! The doctors were wrong. Was he perfect? No, he was perfectly imperfect, and he was HERE. Alive, and a fighter.”
‘He is broken and breaking,’ the doctors said. ‘No hope. Always fatal. It would be kinder to terminate,’ they tell his mom and dad.’: Newborn with Brittle Bone Disease diagnosis defies the odds to become family’s ‘fighter’
‘When he turned a year old, he couldn’t sit up. He didn’t play with toys. He was essentially a newborn. He kept his left hand clenched, and his entire left side was tight.’
“I’ll never forget the words he said. ‘Knowing what his brain looks like, I can’t believe he is talking like this.’ I went to my car and cried. I cried tears of joy and tears of relief. And if I’m being honest, a few tears of fear. By early May, it was confirmed.”
‘I heard her in the hall, talking about the ‘awful day’ she was having, and all the’ rough news’ she was having to break to families. When she entered, everything changed.’
“‘Can my day just be done?,’ I heard her say. She then said a word that took me by surprise, and scared me: ‘Abort.’”
‘I was 25, pregnant with twins, and had a 21-month-old son. After the babies were born, I noticed what I thought was a Clogged Milk Duct from breastfeeding. Then my life turned upside down.’
“I was using a breast pump, and noticed a lump. I shrugged it off. I took an electric toothbrush, holding it on the lump trying to break it up. I was stressing about being able to breastfeed two little humans. The office was empty. Everyone had left except for the doctor who was about to read the results. All I could say was, ‘What??’”
‘My husband and I watched in horror. ‘Don’t worry, he’s going to be okay.’ I nodded, but all I could think was, ‘NO, my newborn just had heart surgery, NONE of this is okay.’
“Every day I wonder – is today the day we get the call there is a heart for Max? Is today the day my son gets a second chance at life? He is still fighting hard. We refuse to give up on him.”
‘He was yelling down the hospital halls, ‘Best day ever!’ As happy as I was for my son, I felt such sadness for my daughter. She was diagnosed first.’
“Both of our babies had cancer. Even before their diagnoses, they were inseparable, best friends. We sometimes joke, he couldn’t even let his sister go through brain cancer without him.”
‘I arrived weighing only 3-pounds, with my organs outside my body. It was a complete shock to my parents. ‘Everything is fine,’ my guardian angel told my mother to keep her calm.’
“I was bullied for looking different. I would get called ‘inside out girl,’ a ‘freak’ and ‘alien.’ It got nastier, telling me everyone would be happier if I was dead, and that I should kill myself.”
‘It was the middle of the night when I got this call. I sat in the basement, frozen and in shock. Please tell me this is just some virus that will go away next week.’
“We also noticed he had a bruise on his back from one of his Nerf gun battles that wasn’t going away. Nothing crazy, nothing that made us extremely worried at the time.”
‘Before the doctor punctured my belly, my husband looked to me. ‘Do you wanna know?’ My fairytale pregnancy was being ripped apart.’: Mom’s devastation over shocking Lymphatic Malformation diagnosis leads to ‘pure bliss’
“I had no clue what to feel. I was so devastated that something was wrong with our perfect little baby. The only thing running through my mind was, ‘Please don’t take my baby.’ I never once cried seeing how severe his malformation was. I just kept thinking, ‘That that’s my baby boy. I was so in love.’”
‘He looked at me screaming, helpless because he felt they were torturing him. All mommy could do was hold him tight, but not stop them. The room caved in on me. I wasn’t ready.’
“I took him to his pediatrician with no knowledge of what was to happen later that evening. The doctor walked in, looked at his stomach bulging out on the left side, and told me to go straight to the Children’s Hospital.”
