“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.”
‘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’
‘Yellow!’ Micah pointed to an adorable little chick with a big smile. Then, he spiked a 106 fever.’: Woman loses 3-year-old to Arthritis, ‘I am a mother, that will never change with time, space, or death’
“‘Are you SURE?’ I asked the doc, reading the report. ‘It would be like being struck by lightening TWICE. He’s fine.’ They were wrong. He was SICK. Sicker than any baby I’d seen. I walked into the PICU bathroom, shut the door. I screamed, moaned, punched the mirror, and cried the guttural tears of a mother who already knew how the story ends, because she’d lived it before. I was reliving my worst nightmare.”
‘The day my baby died, I won tickets to build her a bear. ‘Can I still use them even though she passed?’ Their response? ‘No. The guest must be present.’ My heart shattered in a million pieces.’
“It felt like the perfect thing to do in order to honor and remember her. All I wanted was my baby back. I wanted to be like all the other moms who get to cuddle and snuggle their baby after they are born. A simple no would’ve been okay, but their words felt like a stab to the heart.”
‘This is the last piece of Scarlett we have. A tiny bit if her hair. Her hair was so matted and goopy from the ultrasound gel. The nurse snipped this small bit, and gave it to us right before we left.’
“The nurses wanted to put a bow on her, but I knew it wouldn’t look natural. Scarlett hated anything on her head. Having a bow on her head would only prove to us how gone she was, no fussing, no swatting or whining. I couldn’t bear the thought of it.”
‘He’s not breathing!’ His entire arm was jerking. What was going on?! ‘He was just screaming! How could he not be breathing?’ Then my phone rang.’
“He was admitted to the hospital ‘just to do some routine stuff’ since he was young for such a high fever. I didn’t love the idea, but I was willing to do whatever was needed. Then something unexpected happened. Trevor started screaming. The nurse reached for the ‘Code Blue’ button on the wall.”
‘I woke up with the worst pain. ‘They’re just headaches,’ I said. Something in my mom’s heart kept pushing. ‘There’s something in your brain,’ the doctor said. I was 11, and so confused.’
“I was rushed to the PICU. I tried to stay calm, but I was terrified. I couldn’t help but think, ‘How could I have done anything wrong to deserve this?’ I hid everything behind a smile, but I knew my life would never be ‘normal’ again.”
‘I was going to donate to her fund, but I found out her parents are lesbian. Sorry.’ My wife received this horrible message. We were so hurt.’
“We got a 3D ultrasound to find out the sex. It’s a GIRL! I bought hair bows and tutus. We were beyond excited. She was born perfect and healthy. No one knew she was hiding a secret illness. After realizing our sick child has two mommies, she couldn’t donate.”
‘She is literally an angel from heaven. But We. Were. Terrified. Instead of leaving the doctor smiling, we were scared. ‘There’s something wrong with the baby!,’ we sobbed.
“I was a first-grade teacher. My students didn’t know anything was wrong with the baby. It was difficult. They didn’t understand why I was out so often, why I wasn’t myself. I felt isolated. Alone. Misunderstood.”
‘I put you in your mom’s arms so you could be snuggled while you drifted off to sleep. I hid behind the curtain and shed silent tears. I still hear the echo of, ‘I’m so sorry, but he is gone.’: Nurse recalls ‘absolute honor’ of caring for CHD patient
“I remember every single detail about this day. I knew what I was coming into, but in no way was I prepared for it. Your nurses before me had gotten you so handsome, dressed for your family. You looked so small in that big bed.”
‘I noticed Ellie had a cough. Then everything got scary really fast. All the blood in my head rushed to my feet. I caused my child’s illness.’
“I knew it was serious, so I finally broke down and called my mom. I told her I was in the ambulance and I didn’t think Ellie would make it. She told me she woke up around 3:00 a.m. and started praying because she felt something was wrong.”
