trisomy 18

‘Our baby is going to die.’ Harper spiked a 106-degree fever. ‘She has a 1% chance of making it to her first birthday.’: Mom births miracle baby with Trisomy 18

“The doctor said, ‘These kind of babies do not make it full term and if the baby is born alive, they only live a few days…a week at most.’ Weeks later we were told, ‘We can’t find any markers.’ They couldn’t see any holes in her heart and all of her other signs had disappeared. She looked perfect. My husband and I were lost and confused.”

‘The doctor said, ‘If she’s born, she will look scary and be a burden.’ My husband questioned my choice. I decided to walk this path alone.’: Woman births baby with Edward’s Syndrome, ‘Every moment is the greatest gift’

“‘Hello?’ I answered the phone, recognizing the phone number of my OB office. I can’t tell you how the rest of the conversation went because I was absolutely in shock. I heard the words ‘incompatible with life.’ I was encouraged to terminate the pregnancy and was told if born, she would look scary and would be a burden on our family.”

‘Sweet dreams baby boy, mummy loves you.’ The tiniest coffin lowered into the ground. That’s when it really hits you.’: Woman loses son to Edward’s Syndrome, ‘We gave him the most love we possibly could’

“We sat down that night with our oldest two. We explained we were so truly lucky because instead of a baby to bring home, we were given the rarest of gifts: an angel baby. They sobbed, ‘But we want him to come home.’ We purchased his plot where he would soon be laid to rest. At 32 weeks, we met with the funeral director – all as he kicked playfully inside my belly.”

‘Please God, give her back! We already knew, she’s gone. I was weak from grief.’: Mom recalls loss of daughter, uses music to keep her memory alive, ‘No matter what I’m singing, I know she’s there, because she is my song’

“It was just me and Alice at the hospital. There was a soft glow from the bathroom, the door barely cracked. She laid on my chest, we were just there together, soaking each other in. Time stood still. She was so feminine, petite. I say, ‘I know whenever I sing, you are there,’ and I truly mean it. It’s as if I am sharing my beautiful, perfect daughter, and that brings me joy. I would find her singing to herself in her bed. I knew we would be connected through music forever.”

‘Our son’s entire 18 hours and 16 minutes of life, he was never alone. He was fiercely loved, deeply cherished, and widely celebrated.’: Mom turns loss of son’s ‘fleeting life’ to Trisomy 18 into ‘something of value’

“We were going to travel, tackle, and triumph over every inch of this world. I asked myself one very important question, ‘How can I transform my son’s fleeting life and too-soon death into something of value?’ I thought I lost the chance to have a great adventure with Cole when I lost him, but I think our great adventure together is really just beginning.”

‘Parts of our baby’s brain were missing. I spent all my time crying. My husband spent his time avoiding it all. ‘Please don’t plan a baby shower.’ I didn’t want to return things if my baby died.’ Woman’s baby diagnosed with HPE, claims there’s ‘hope after prenatal diagnosis’

“Everyday interactions like strangers asking about my baby in the grocery store felt like ripping open a wound. I tried to prepare my 3-year-old for the chance that his baby sister may not come home from the hospital. As my due date approached, we considered planning for a funeral. But how do you truly prepare for the death of a child? I felt so bitter.”

‘My doctor held my hand and started, ‘Tami…’ In that moment, I knew. I couldn’t breathe because I knew. Or at least I thought I did. My heart exploded with relief!’

“We were walking out of the house when a feather floated right in front of us. As we sat enjoying our morning coffee, another tiny feather made an appearance. On the drive home, I kept thinking … two feathers … what does that mean? But I had a hunch. I went straight to the bathroom and found a pregnancy test.”

‘Let them just hold their baby.’ He looked different. I’m filled with gratitude for her compassion.’: Couple learns of newborn’s rare genetic syndrome, encourages others to see ‘grace’ in their journey

“As we calmly talked on that moon-lit drive, my husband said something to me I’ll never forget. He broke a short silence. ‘If anyone would be trusted with a special-needs child, it would be you. You have the grace and patience to do this.’ I’m overjoyed knowing we’ve been included in an elite club.”

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