“I injected her chubby thighs with steroids twice a day. My beautiful, happy baby gained 5 pounds in a month. She acted like she wanted to crawl out of her own skin.”
‘She looks so good!’ the nurse kept telling me. Yet tomorrow, surgeons would remove half her brain.’: Mom shares daughter’s Infantile Spasms diagnosis
‘A tear of pride rolled down his cheek. ‘My son.’ Even if my husband was on the other side of the world, we were together.’: Military wife shares son’s journey with Down syndrome, ‘Focus on the good’
“My husband and I sat silently in the front seat of my car. ‘Your baby has Trisomy 21.’ For a moment, my heart stung. My husband deployed to the Middle East for 6 months. Our adventure continued.”
‘He’ll have severe disabilities.’ Each smile is priceless. We have an even greater appreciation for the ‘little things.’: Mom advocates for son with undiagnosed condition, ‘He’s one of a kind’
“Our 6-week-old son lay in a hospital bed next to us, all hooked up. The prognosis was grim. Watching your child have seizure after seizure, knowing there’s nothing you can do, is gut-wrenching. He might not understand what’s happening, but he’s so strong.”
‘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’
“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.”
‘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.’”
