hydrocephalus

‘Call 911!’ My baby was twitching. I held his limp body. I heard sirens. They were coming for MY child.’: Boy suffering from Childhood Epilepsy undergoes brain surgery, ‘he is now happy and living with half a brain’

“We were getting ready for a nice picnic at the park. Suddenly, the right side of his body went stiff. His oxygen dropped. First firefighters, then paramedics. Our house was full of first responders. ‘Why is nothing working?!’ I wanted to wake up from this nightmare. I wanted him to live. I held my breath.”

‘There are concerns in the ultrasound.’ My doctor used scare tactics to push me into terminating my baby. I tried not to break down.’ Mom fights back after being pressured to abort baby with brain defects 

“My doctor told the story of another mom’s heartache to scare me into doing what she wanted me to do. Why was she pushing termination on me SO hard? And why the heck was she calling to tell me over the phone?! Not ONCE did she apologize or say, ‘I’m so sorry.’ Instead, she told me how to parent.”

‘Parts of our baby’s brain were missing. I spent all my time crying. My husband spent his time avoiding it all. ‘Please don’t plan a baby shower.’ I didn’t want to return things if my baby died.’ Woman’s baby diagnosed with HPE, claims there’s ‘hope after prenatal diagnosis’

“Everyday interactions like strangers asking about my baby in the grocery store felt like ripping open a wound. I tried to prepare my 3-year-old for the chance that his baby sister may not come home from the hospital. As my due date approached, we considered planning for a funeral. But how do you truly prepare for the death of a child? I felt so bitter.”

‘The doctor said, ‘The parents need to understand there is no chance of their daughter having a meaningful life.’ I thought, ‘My daughter has meant more to me in the last 2 days than you will EVER mean to me.’

“What would our daughter have to do to be meaningful? Would she have to talk? Would she have to be able to solve math problems or perform in the school play? Graduating? Getting a job? Getting married? At what point would the doctor say, ‘Ok, you are meaningful now.”

‘We’ll operate to decrease her brain damage. Nevermind. BMI is too high.’ I was too fat to save my baby.’: Mom births baby with ‘severe’ Spina Bifida, says she is ‘not disabled, just does things in her own way’

“One morning, a woman came in swiftly wearing a leopard blouse and clicking her heels. She walked right over to me. ‘Sorry for the bad news,’ she said and walked away. What bad news?! I wasn’t informed of any bad news! I broke out into tears as she exited. During the gender reveal, I was hiding this secret while watching my mom cut into our cake. I was giving them a broken baby.”

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