“The nurse dropped the bottle on the counter and left. It gave him a massive blister on the little bit of palate he had. He lost over a pounds in 3 days. He was starving!”
‘He has a growth.’ No one came to help. We had to watch a YouTube video on how to feed our newborn.’: Mom shares son’s journey with cleft palate, ‘We do it for our babies’
‘Did you get kicked in the face by a horse?’ In that moment, I saw red.’: Woman shares cleft lip and palate surgeries to give other parents hope
“To tell you I was hurt doesn’t do it justice. In that moment, I saw red. ‘No, I was born with a cleft lip and palate.”
‘I gently patted my son’s back when I heard a crackling, wheezing sound. ‘Something’s wrong, I just know it,’ I told my husband.’: Mom candidly shares journey with parenting PTSD
“I cried to the nurse on the hotline, ‘It sounds like he has fluid in his chest.’ I would sit nursing my son, crying endlessly in that rocking chair. Every breath my son took heightened my already over-the-top anxiety attack. I knew it wasn’t just anxiety. It was something more. This was the start of so many triggers.”
‘The doctor wants to speak with you.’ I always imagined what she’d look like. Now, I’m afraid to meet her.’: Mom of ‘cleft cutie’ says ‘I fell in love with her smile twice’
“When she tried to look at her face, she paused for a while. I will never forget that pause. It was like the air had been sucked out of the room. I turned away. I grieved over the vision of my daughter I had created.”
‘Are you ready to let her go? Babies sometimes need permission to go.’ I was so focused on bringing her home, I was shocked.’: Couple accept Trisomy 13 diagnosis, ‘Our angel had a short mission on Earth’
“’Some babies with this condition didn’t live past 7 days.’ I was heartbroken. I started thinking of my father. It was his first grandchild, and he probably couldn’t meet her. My sister was coming in 12 days, and she might not make it in time. I told my husband, ‘I’m not going home without our baby.’ I was so focused on bringing her home, her words shocked me.”
‘Are you joking?’ My doctor had a very serious look. ‘Pregnancy is not something I’m allowed to joke about.’ I’d been taking birth control pills.’: Mom births warrior baby with ‘sweet cleft smile’
“I said goodbye to his sweet, wide smile and tried to hold it together as the nurse carried him away. The second I got to the café, with my COVID-19 mask under my chin, I ugly cried into my sandwich. I texted my best friend, ‘I’m going to puke or soil my pants.’ I was a ball of emotion.”
‘The doctor paused at the end of the bed. ‘Uhhh…it’s a boy that looks a lot like a girl!’ My husband took a closer look. ‘OH MY GOD, IT’S A GIRL!!!’: Mom births baby with cleft lip, ‘She is my hero’
“We cried loud and hard and basked in that moment of complete shock and joy. The room seemed so loud, when suddenly somewhere in the room I hear the words, ‘What about the lip…’ and then deafening silence. I shot straight up, picked her up, and flipped her over. The world stopped. ‘Babe look….’ My husband turned pale.”
‘I don’t want any more operations!’ It was so hard on me, I decided enough was enough.’: Woman with Apert Syndrome wants people to know, ‘‘I have a great personality if people take the time to get to know me’
“I was about 6 or 7 when I truly realized I was different from other kids. I looked different. There was a lot of staring, whispering, and pointing fingers from other people, as they had never seen anyone like me. I sometimes feel lonely and would love to have more friends.”
‘It took him nearly an hour and a half to finish a bottle. Milk would come out from his nose, his ears. EVERYWHERE.’: Boy’s cleft lip and palate ‘gave him a chance to know why he’s special from an early age’
“I was alone when they told me. I do remember carrying my still squirming baby boy up the stairs to his room and collapsing on the ground next to his dresser, unable to move, unable to even cry. A strange thing happened during this time. I grew up. I got tough. To the rest of the world, it was a defect, but to us, it was precious.”
‘What’s wrong with her? Can it be fixed?!’ I had wide-set eyes, webbed fingers. People can’t help but stare.’: Woman meets child with similar Craniofacial differences, ‘I hit the jackpot and found belonging’
“I’m a closet Web MD researcher. I typed in all the things I was born with and a term popped up. Low and behold, there were kids all around the world that looked like me! I’ve always made up wild exaggerations as to why I was born this way. Now, I need no answer. For the first time in my life, I can say, ‘Me too.'”
