hydrocephalus

‘The vet said, ‘I’ve never seen anything like this in my 35 years. The odds are astronomical.’: Boy battling craniosynostosis finds puppy with rare, nearly identical brain pressure condition

“I was cutting my son’s hair on a Friday afternoon when I noticed his head looked a bit different. His forehead popped out quite a bit and the top of his head was higher than the back. Months later, we noticed our puppy was becoming more and more sleepy. He was having a hard time standing on his legs and would get winded very fast. ‘The odds of them both having this are astronomical.’ The news hit me like a brick. Thanos and Branson were meant for each other.”

‘This child will be a burden to you.’ Her chocolate eyes shot through my screen. ‘Oh, crap.’ A feeling washed over. ‘There you are, my child.’: Woman adopts girl with spina bifida, epilepsy

“A feeling washed over me. The exact same wave that washed over when they placed my biological children on my chest in the delivery room. ‘There you are, my child.’ Stroking my cheek, I felt her 28 pounds snuggle into mine. ‘Mommy, I’m so glad you found me in Armenia. I missed you even when I didn’t know you.’ She fed my soul, and she doesn’t even know it.”

‘Why weren’t we told this sooner? Obviously they suspected brain bleeds. Why didn’t we know?’: Newborn suffers brain bleeds in-utero, defies all odds to survive, ‘he’s leaving a trail of middle fingers behind him for the naysayers’

“My husband arrived just seconds before the doctor said, ‘He is out!’ I was certain he had died. I couldn’t stop shaking while they stitched me up. But he was perfect, with a surprising amount of thick, dark hair. ‘There’s a high likelihood he’ll never walk or talk.’ They asked if we wanted to stop life-saving measures. We stood our ground. He’d be our ‘wayfinder.’ We trusted he’d tell us in his own way if things became too much, and it was time to stop fighting.”

‘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.”

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