“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.”
‘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’
‘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.'”
‘THERE’S A HEARTBEAT!’ she screamed. Next, we found ‘the bump.’ All I could feel was shock.’: Baby survives twice despite all odds, ‘he was worth every step of the way’
“My doctor saw blood and wouldn’t even attempt to check if my baby was alive. ‘WHAT?! You’re not doing an ultrasound? Blood work? Doppler?’ He shook his head no. ‘There is no use. You’re losing your baby.’ He dismissed us without emotion and left. The next day, we went to the OB to confirm the miscarriage. WHOMP WHOMP WHOMP. The nurse burst in, full-on sobbing. We were urged to terminate the pregnancy.”
‘Excuse me, my child has a question about your face.’ Others pulled their kids away like I shouldn’t be looked at.’: Woman with Craniofacial differences reminds us to use ‘kindness’ to approach uniqueness
“In middle school, kids started to stare and ask, ‘Why does your face look smooshed? What’s wrong with your nose?’ My mom would tell me how pretty I was and I’d always say, ‘You’re my mom, you have to say that.’ I’d spend so much time buying cuter clothes, different makeup, more jewelry to overshadow my face. But when I stripped it all down, my confidence was gone.”
‘What’s wrong with her fingers?,’ my husband asked. ‘They look strange, but they’re perfect.’ Then he saw her toes.’: Parents surprised by daughter’s Apert Syndrome diagnosis, ‘she just wants to be loved’
“The doctor yelled to get the NICU team as soon as possible. They came in so fast we could hardly get a picture. I don’t remember anything afterwards except that my husband googled her syndrome based on her appearance, and I was left alone in the delivery room. No husband. No baby. I asked for a Diet Coke. They only had Diet Pepsi.”
‘As I lay on the operating table, I heard the ONE word I dreaded. They wrapped him up, brought him over. I began to sob. ‘How can my heart be rejoicing and breaking at the same time?!’
“The room began spinning. I was thrilled to have my baby but terrified by the words used to describe him. Unlike his older brother’s birth, not one person came to see him. No flowers were delivered. No one knew what to say, so they said nothing. On that day, my life became defined by two words. Before and after.”
‘He wanted me to get a second opinion. ‘Is it a boy or a girl?,’ I frantically asked. ‘Are you sure you want to know?’ ‘Yes, please tell me.’ ‘A boy, it’s a boy.’ Things like this don’t happen to people my age.’
“When our oldest son saw him, fear set in. He was scared. He loved him dearly, but seeing my son afraid of his baby brother is something I’ll never forget.”
