“There were so many unknowns. We were asked multiple times if we wanted to terminate. Everything about having our first baby felt not fair. We just wanted normalcy.”
‘We were told, ‘She may not be born breathing.’ Scared was an understatement.’: Mom gives birth to baby with DiGeorge syndrome, ‘She’s our miracle’
‘Our newborn photographer said, ‘Coincidentally, my daughter has it too.’ I’ll never forget her next words: ‘Appreciate his bare chest. Soon, it will be scarred forever.’: Mom details emotional journey with son’s Congenital Heart Disease
“I’ll never forget her next words: ‘Appreciate his bare chest. Soon enough, it will be scarred forever.’ Every day, I am reminded of my son’s disease in the form of an exclamation point on his chest.”
‘Her heart’s on the wrong side.’ She held the tip of my finger. We thought we beat the odds.’: NICU survivor diagnosed with Cerebral Palsy, ‘One day she WILL walk’
“We were having a baby 6 weeks early. ‘I need to hear her cry!’ I entered the world of the unknown.”
‘Something’s happened to Drew. We were on our way to the park.’ I thought, ‘He’ll be OK.’ I had to keep my promise to him.’: Woman with CHD becomes advocate after losing nephew to disease
“The doctor said, ‘Time to pray.’ She’d never seen so many tubes in such a little body. They filled with blood. ‘We’re having a problem.’”
‘His intestines were twisted. ‘He likely won’t survive.’ He quickly added, ‘But miracles do happen.’: Miracle baby with Kabuki Syndrome defies 10% survival rate, ‘This is only the beginning’
“The medical team sat down with us, ‘We’re worried.’ They prepared us for the worst. We continued to watch Oliver gain fluid and wondered what would be.”
‘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.”
‘You aren’t leaving without delivering.’ I sat in disbelief. After 7 days of life, they cut into his side.’: Woman gives birth to baby with CHD, ‘We are blown away by his strength’
“I was recovering from birth while walking from the parking garage to my baby multiple times a day, changing my pad in a hospital bathroom, setting alarms to pump. I mustered up the strength to sit at a hospital, postpartum, while my 1-week-old baby had his chest cut open.”
‘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.”
‘Unless you have a sick kid, you don’t understand. I wish I only had normal fears. I know any breath could be her last.’: Mom of CHD baby worries during Covid 19, ‘Your fears for your child’s health are NOT bigger than my fears.’
“Her appointment was flat out canceled, and her developmental checks were rescheduled and then canceled. For a normal child, that would be no big deal. For a child who just had major surgery that did not fix everything, those appointments are everything. I wish I could be ignorant like you.”
