“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.”
‘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’
‘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.”
‘You’re lucky he didn’t die in his sleep. He is 1 in 6 billion and will be bedridden for life.’ I clenched my husband’s hand in disbelief, tears welling in my eyes.’: Mom praises medically complex son, ‘He is our little heart warrior’
“He was lifeless and pale. The clock was ticking. All we could do was pray and hold his little hand. Sitting beside his hospital bed, 3 genetic doctors in white coats rushed in. ‘Can we go to a private room to talk?’ I walked down the hallway in a fog. ‘We were wrong. It’s severe. He will never live independently on his own.’ Soon after, he had a stroke and began seizing up. This was the worst-case scenario. It was really happening.”
‘Mama, this is the guy from the airplane I made friends with!’ She called Greg her BFF. Only 4 months later, she was dead.’: Mom wants others to know the impact of ‘difference makers’ after daughter dies from heart surgery
“Our precious Amie was approaching her next open heart surgery. ’Wanna play hooky from school?’ She excitedly said, ‘Yes!’ I secretly handed the next note to one of the most amazing difference-makers ever. He wanted to introduce the ‘celebrity’ on board. The look on her face was beyond amazing. This would be the last adventure we would ever be able to take together.”
‘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.”
‘She had abnormal, starry blue eyes. I had a gut-wrenching feeling. We were told ‘not to worry.’ A checkup for a mild cough changed our lives.’: Mom births baby with Williams Syndrome, ‘Genetic disorder or not, we will love her more each day’
“Her low birth weight was dismissed. The doctor told us her heart murmur would ‘dissipate on its own’ and she would be just fine. Little did we know, these were the very first signs. As much as I wanted to convince myself nothing would be wrong, I had a gut-wrenching feeling. My mama heart just knew. They failed us.”
‘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.”
‘The magnitude of your child being born. No words. She did this for us, TWICE.’: Mother overcome with emotion watching surrogate deliver second daughter, ‘I gained a bond I never even knew existed’
“It was 6 months post my 4th open heart surgery. I was celebrating turning 26, a milestone my mother and doctors never thought I’d reach. That night, I met Ryan. ‘You don’t want to be interested in me. I have a lot of baggage.’ He replied, ‘What do you mean?’ ‘I’m probably going to die soon.’ Within 8 months, we were engaged. Not everyone approved of us looking for a surrogate, you know, because ‘I might die soon.’”
‘The baby is going to suffer. We can take care of this right now.’ They told me to abort him.’: Mom says she came to ‘peace’ with her son’s Down Syndrome diagnosis, he became a ‘warrior’
“’I don’t know what’s wrong, but please fix him!’ She was treating my son like a mole that could simply be removed and thrown in the trash. I knew I had to protect him. Handing him over to the surgeons knowing I may never see my baby boy again was the hardest thing I’ve ever done. We are better people because of Eli.”
