“Her body was too small to close over her swollen heart. Piles of machinery overwhelmed her metal crib. I hesitantly brought a small box into the ICU. Inside was a blanket and matching hair bow. I was shocked by how stunning she looked.”
‘She may not survive surgery.’ For 9 days, her chest remained open. She wasn’t the baby I expected.’: Mom has photo shoot in ICU before preemie passes to ‘make each day beautiful’
‘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.”
‘Your heart is abnormal.’ I sent emails for a month with no reply. I already fainted at work and threw up blood.’: Woman with congenital heart defect shares struggles, ‘Keep fighting, warriors’
“I was constantly having hot flashes. I ended up throwing up blood and fainted at work. ’Go to Urgent Care.’ They weren’t really sure what was causing my problems. I was constantly waiting in the doctor’s office to get bad news.”
‘She’s missing a bone in her leg.’ We had an impossible decision to make. I kissed her little broken foot goodbye.’: Mom amputates infant daughter’s leg, ‘She’s our saving grace’
“The doctors hit us with a heavy blow. ‘She won’t be able to walk. Ever.’ We tried to memorize how she looked with two little legs.”
‘I cried all day, waiting for a call from our doctor. She needed to see us right away.’: Family discover 2 other children have complex heart issues after newborn’s complications
“I was secretly hoping for a girl, but the sonographer told us it was a boy. I looked at Austin, smiled, and said, ‘At least we make healthy boys.’ The sonographer’s reaction was a little startling. She said, ‘Well, wait…’ She couldn’t get a good view of his heart, but she didn’t know why.”
‘At 11-years-old, I coded on the table. ‘You’re on your second soul.’ It messes with your mind.’: Chronic pain warrior with Complex Regional Pain Syndrome suffers stroke, finds community, ‘It’s about being there for each other’
“My first stroke was at 11 weeks old. By the time I was 4, I had three open-heart surgeries. Once, I made a list of things I have tried over the years for my pain. It was three pages long. You name it, I’ve probably had it.”
‘She started with, ‘So the good news is…’ My heart sunk. When they took her away we were a mess.’: Baby with Down syndrome diagnosed with congenital heart failure, ‘She is a miracle’
“I sat in my car crying in the parking lot. ‘She’s going to need surgery.’ I mourned the loss of the child I thought I was carrying.”
‘Our baby is going to die.’ Harper spiked a 106-degree fever. ‘She has a 1% chance of making it to her first birthday.’: Mom births miracle baby with Trisomy 18
“The doctor said, ‘These kind of babies do not make it full term and if the baby is born alive, they only live a few days…a week at most.’ Weeks later we were told, ‘We can’t find any markers.’ They couldn’t see any holes in her heart and all of her other signs had disappeared. She looked perfect. My husband and I were lost and confused.”
‘He told me, ‘It’s all in your head.’ I hoped something bad would happen to me so I’d be taken seriously.’: High schooler diagnosed with Pulmonary Hypertension undergoes open heart surgery, ‘I’m grateful for this second chance at life’
“Band camp started. I was having trouble breathing and couldn’t walk to class. I was given an inhaler to use, but it didn’t help. One specialist said I would never get better.”
‘She was a ticking time bomb. ’Was this my fault? It could be the last time we’d see her.’: 4-month-old with Williams Syndrome survives open heart surgery, ‘She is our perfect daughter’
“I still had the ‘it won’t happen to me’ mentality. When I saw the cardiologist’s number pop up on the phone, I started sweating. For 10 hours, my husband and I sat in the parking garage of the hospital, crying.”
