“They printed out a sheet from Google explaining the condition. ‘He’ll never leave the NICU.’ He had his first seizure and stopped breathing. I knew God would heal him.”
‘We aren’t just going to let him die!’ I slammed my hands on the table. I knew this wouldn’t be our story.’: Baby survives terminal NKH diagnosis, ‘We take note of every little miracle’
‘OF COURSE the doctor knows more than me.’ An alarm went off in my head. We didn’t want to hand her over.’: Mom advocates for baby with Down syndrome, ‘She taught me to use my voice’
“Our baby’s heels were full of cuts from blood draws. We were battling low blood sugar, jaundice, and feeding issues. We spent that week walking around like zombies. She had no idea what was coming, but we did.”
‘She’s been gone too long.’ It was a freak event during birth. She stopped breathing twice, turning grey.’: 2-day-old baby diagnosed with brain bleed, ‘She’s our big adventure’
“I knew something was wrong. A nurse came in and said Ellis had stopped breathing in the nursery twice. ‘She’s at high risk for significant developmental disabilities.’ He encouraged my husband and I to have a conversation about what to do if our baby didn’t wake up.”
‘Have you noticed he can’t use the right side of his body?’ The hits kept coming. I was powerless to stop it.’: Woman advocates for son with Refractory Epilepsy, ‘I’m thankful for every milestone’
‘But he doesn’t have it yet,’ they said. YET, YET, YET. The words pierced my soul. Why aren’t you telling me he’s going to be fine? Now, it’s okay to freak out.”
‘How will we tell her sister?’ I held her limp body, kissing her and praying she’d breathe again.’: Baby diagnosed with Lissencephaly, ‘She is a true miracle’
“I said, ‘Something is wrong, I just know it.’ Her body would twitch, eyes blinking faster than you could ever imagine. Her lips making a loud smacking noise. It scared me to death. The questions started to flood my mind…how long did we have with her?”
‘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.”
‘Her oxygen levels dropped. She had blisters and dark swirls all over her body. Ever seen a movie where someone gets devastating news and collapses down a wall? That was me.’
“After about 8 hours of not being able to get our 5-day old daughter to eat, we took her to the emergency room. ‘She’s fine,’ they told me again. I kissed my 2-year-old. ‘I’ll be back as soon as I can. I’m just going to go make sure your sister is okay.’”
‘There is a baby, and there is a heartbeat.’ Those words sparked hope. Then, our doctor told us I should take it easy, and wait for my body to abort the baby. WHAT?! No.’
“There were more seizures, and this time it was Infantile spasms. He paused before asking, ‘Have you ever heard of this?’ My heart nearly stopped. There was no way. When we were matched with a puppy, they were instantly at peace. We knew, they were made for each other.”
‘It looked like she was doing a stomach crunch. Both arms and legs came together in the air. This went on for hours.’: Mother thrilled to have her ‘happy baby back’ after Infantile Spasms diagnosis
“We first noticed a weird movement when she was 5 months. Doctors said, ‘It’s just gas. Change her to soy milk,’ and, ‘It’ll pass.’ It wasn’t until her dad decided to search ‘spasms,’ that we began to gain insight into this nightmare. Something in me snapped. She was using our daughter for her own research. ‘I’m so sorry baby,’ her dad always said. Through all this, Salma has never shown signs of giving up.”
