CHD

‘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.”

‘If you want to go, we will let you. If you want to fight, we’ll fight forever.’ She didn’t want us to suffer.’: Mom loses baby to Pulmonary Atresia, Intact Ventricular Septum, ‘She made heaven so much bigger’

”I asked my Gramma once, ‘Why do day-lilies only last for one day?’ She just smiled at me and said, ‘Well sweetie, when you are that beautiful, I guess one day is enough.’ We woke up and headed to our baby’s room. We were greeted in the hallway by one of her doctors. ‘I don’t think she’s going to make it through the day.’ We promised to do whatever she wanted.”

‘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.’”

‘She took her last breath in her daddy’s arms. She was absolutely beautiful, perfect. I wouldn’t survive.’: 18-year-old parents lose daughter at 20-days-old, says ‘you never get over it’

“‘There is nothing more we can do.’ We counted her tiny fingers, toes. She had my nose, and the most stunning blue-green eyes. We held her hand, stroked her hair. It was the first and last time my husband got to hold his daughter. The little girl whose name he chose. The nurse wrapped her in a white blanket and handed her to me. I took in every detail of her beautiful face, holding her tiny hand until all warmth was gone.”

‘He opened his beautiful, dark grey eyes, wise beyond his years. We made him comfortable, and waited.’: Mom vows ‘as long as I live, Daniel’s memory will too’ after losing son to congenital heart defect

“At the end of this long, exhausting appointment, Charity says, ‘Oh, and congratulations on your baby.’ Congratulations on our baby? You mean the one you told me is going to die? I ran out of that room so fast. Despite it all, his broken heart kept beating. I recall a single tear escaping my eye and falling on his face.”

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