“’This defect is so rare, you’ll probably never see it in your lifetime.’ I felt like I was in a dream. I pinched myself a few times. What snapped me back to reality was the doctor saying, ‘I can do these surgeries, but his chance of survival is slim.’ I wanted the nightmare to end.”
‘You can choose comfort care or surgery.’ I wanted to scream. I didn’t know what quality of life he’d have.’: Mom loses baby with Hypoplastic Left Heart Syndrome, ‘He only knew love’
‘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.”
“My husband felt something was amiss. ‘Nothing’s wrong!’ I said. Soon after we were living our nightmare.’: Mom of baby born with congenital heart disease says ‘you must be their advocate’
“’Don’t forget about the echo.‘ It hung in the back of his mind. She stopped breathing in her sleep and the nurses banged on her chest. I thought it was all behind us, but his gut was right.”
‘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.”
‘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.”
‘His heart kept stopping. It was as though I was adrift at sea, waiting for a life vest.’: Mom births baby with Down syndrome who has open heart surgery, ‘I’ll spend the rest of my life shouting his worth from the rooftops’
“The first 36 hours of my son’s life were some of the worst of mine. I wanted to turn back the clock and return back to my normal life. In that hospital room, it felt as though nothing would ever feel normal again.”
‘You can go home now.’ How could I leave him? I felt as if a black cloud surrounded us.’: Couple’s last baby born with Down syndrome, ‘Our precious bonus child is a gift’
“All I wanted was to run down the hall to the NICU, scoop my baby up, and run away. Away from all the seemingly bad news. I didn’t want to know any more.”
‘All they see is ‘locked in his room’ and immediately jump to ‘savior’ mode.’They call CPS without knowing the damage it can do.’: Mom of bipolar, autistic son advocates for mental health, ‘Each victory makes us stronger’
“He has been up till 2:00 a.m. every night the past four nights. I can see the exhaustion in his eyes, but his brain is on rapid-fire mode. I feel like a horrible mom sitting on the floor in the hall outside his room, which is locked, listening to him.”
‘We can’t do anything else.’ I was 18 with a deceased baby. They pulled a drain tube out and her little belly filled with blood.’: Teen loses daughter to congenital heart disease, donates 455 oz. of breast milk to save sick NICU babies
“She had open heart surgery at just 1 day old. I was terrified. My little girl was on full life support. ‘Why would God give me a sick baby?’ She was bleeding out. I decided to turn something so painful into something beautiful. Even though I couldn’t save my baby, I decided I could save others.”
‘Your baby’s heart is on the wrong side.’ I cried. ‘PLEASE be with him, I don’t want him to be alone.’: Mom devastated to learn of newborn’s heart defect, wishes she could ‘take his place’
“The sonographer went very quiet and kept putting her body in strange positions. She said the baby was laying awkwardly. We had to sign papers prior to his surgery warning us of the risks… death being one of them. We were so helpless. He was so tiny. It didn’t seem fair. I was so excited to see my little boy and give him a big kiss.”
