Congenital heart disease

‘WHAT am I going to do with a sick baby?’ I was 18. Her heart began to give out, her little belly filled with blood.’: Teen loses daughter to congenital heart disease, donates 455 oz. of breast milk to save sick babies in NICU  

“In 73 days, I never got to hear her cry. I never got to feed her or take her home. I spent the next couple of weeks in a dark hole. ‘We can’t do anything else for you, I’m sorry.’ I couldn’t save my baby, so I decided I would save others. I turned my pain into something beautiful.”

‘You can’t put me in ICU Room 6. My mom just died there last week.’: Young woman miraculously survives pulmonary embolisms just one week after mom dies of ‘broken heart’

“I lost my best friend. ‘What am I supposed to do now?’ All I’d ever known was taking care of my mother. Suddenly, I felt a tightness in my chest. ‘Well here is the panic attack I’ve been waiting for since she died.’ I arrive at the ER. The doctor came in. I remembered her. She was the doctor who admitted my mom. My heart rate shot up in panic. I looked her right in the eyes. ‘You can’t put me in Room 6. My mom just died there last week.’”

‘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.’”

‘We begged her to let go. She kept fighting to stay with us. ‘We’ll be together soon. You need to go home,’ we said.’: Mom says daughter suffering from CHD ‘passed peacefully in my arms,’ is ‘finally at peace’

“We went to see Cora for the last time. I washed her hair and gently cleaned her body with a washcloth. I dressed her in our favorite headband and swaddled her tightly. Her sister gave Cora a kiss on her forehead. We told her to say goodbye. ‘Bye bye, Baby Cora.’ My mom took our eldest away so she could pass with my husband and I alone. She was so beautiful, looking at us with such deep love in her eyes.”

‘Dear teacher, I need to apologize for my wife and I. We are going to be knee-deep in your business.’: Self-proclaimed ‘helicopter parent’ pens touching letter about why he’s overprotective of son with congenital heart disease

“His lips get blue when he’s cold, but he’s ok. I have watched his heart stop, 3 times. If you ever have to change his shirt, you’ll see the proof. Be cautious with how the other kids discuss it. He’s proud of it now – but if you let another kid steal that pride, you’ll hear our parental helicopter blades ripping through the air.”

‘Her little chest was open. She was swollen, double her size. She didn’t look like my baby. A nurse calmly said, ‘I don’t feel a pulse.’ All I could say was, ‘NO!’ Over and over.’ Single mom touched by stranger’s act of kindness after hours spent in ER

“I realized I had just watched my baby die. My seven-day-old flat lined and died in front of me. I couldn’t believe how calm they were. Completely restless and emotionally ruined, I posted in a local mom group. ‘I can’t leave my daughter alone, but I really need a coffee.'”

‘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.”

‘We are having a problem. Your baby is floppy and turning blue. She only has a 50% chance of surviving through the night but we’ll do everything we can.’ 

“I woke up suddenly to the sound of my husband’s footsteps coming up the stairs to give me his phone. ‘Something has happened to Drew. He’s had a seizure. We were on our way to the park.’ I remember thinking to myself, ‘I have experienced seizures in the past. He’ll be OK.’ Second phone call. Everything was a blur.”

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