“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.'”
‘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’
‘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.”
‘IT’S A GIRL!’ Suddenly I hear the words, ‘What about the cleft,’ and then deafening silence.’: Mother discovers shocking diagnosis after daughter’s birth
“My baby’s face was still hidden. I shot straight up, and that’s when I saw my baby girl for the first time. The world stopped. ‘Babe look…’ All I heard was silence. ‘Babe look,’ ‘babe look.’ My mom was screaming at my husband. His eyes were glazed over. ‘Everything’s okay, she’s perfect and she’ll be okay.’”
‘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.”
‘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.”
‘There was something wrong with his face. ‘It’s not fair! I wasn’t supposed to have a baby like THIS.’ My husband kept telling me the doctor was wrong, but I knew otherwise.’ Mom a ‘blubbering mess’ after ultrasound reveals son’s cleft lip and palatte
“I walked to the parking lot, then to my car. As soon as the door closed, and no one was watching, the tears started to flow. How could there be anything wrong with my baby?! I couldn’t even picture it. It didn’t make sense. I felt like I let everyone down.”
‘After losing twins, we thought we’d paid our dues. Our life’s suffering was now complete. We were wrong.’: Mom loses ‘rainbow baby’ with heart defects, knows she will meet him ‘in heaven’
“We were overjoyed at my pregnancy. New life was coming! But scans and tests told us it’d come with major heart defects, a missing chamber, faulty valves, and an aorta split into 2 pieces. Blindness. Deafness. A cleft lip and palate. Still, doctors were hopeful. Until they weren’t. ‘He’s a sick guy.’ I was told this in a ‘why the long face? didn’t you expect this?’ kinda way.”
