craniosynostosis

‘The vet said, ‘I’ve never seen anything like this in my 35 years. The odds are astronomical.’: Boy battling craniosynostosis finds puppy with rare, nearly identical brain pressure condition

“I was cutting my son’s hair on a Friday afternoon when I noticed his head looked a bit different. His forehead popped out quite a bit and the top of his head was higher than the back. Months later, we noticed our puppy was becoming more and more sleepy. He was having a hard time standing on his legs and would get winded very fast. ‘The odds of them both having this are astronomical.’ The news hit me like a brick. Thanos and Branson were meant for each other.”

‘He was born looking like he’d been in a boxing match. His face was bruised, but no one seemed very concerned about it.’: Baby is born with microcephaly, ‘I truly see Grayson as the blessing he is’

“They have been unable to find a reason why this happened. I didn’t go out of the country while pregnant, I wasn’t exposed to Zika. He didn’t have a stroke in utero, and there is no gene to blame. We had no idea there was anything wrong before he was born. His whole life has been an emotional whirlwind. I wouldn’t have chosen this for him or for us, but I wouldn’t change it either.”

‘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.'”

‘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 did I do wrong to cause this sweet blonde-haired, blue-eyed boy to suffer like this?’ He woke up so smiley that morning. My husband and I were silent. ‘It’s time,’ the team said. The doors shut behind him.’

“Ten minutes went by…then 30 …then 45. I was in a total panic. Instead of the screen showing he was waking up from anesthesia, it said he was still in the O.R. There was a look of concern in his surgeon’s eyes. ‘For some reason, half of his skull expanded faster than the other.'”

‘My appendix ruptured while pregnant. ‘She is perfectly healthy,’ the doctor reassured. He was so incredibly wrong.’: Mom births baby with craniosynostosis, ‘she is perfectly imperfect’

“The ultrasound photos showed a perfectly formed body, 10 beautiful fingers and toes. Once born, she cried out one time and then fell silent and blue. Her nasal passages were blocked by bone and my placenta was torn to shreds. Avery’s condition was so much more complicated than any of the photos led us to believe.”

‘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.”

‘Through screaming, I coded at 1:25 p.m. 5 minutes later, my son was born not breathing. He was bagged and taken for CPR.’: Mom births baby with rare apert syndrome

“The next thing I knew I felt like I was drowning. I could hear codes being called as my birth got harder to take.‘He’s not fatal, but we have no idea what’s wrong.’ He had 10 fingers and 10 toes, but they were fused together. A first-time mom, I feared I was going to break him. Every irrational fear went through my mind.”

‘Her eyes were huge, her skull was misshapen. Even though we had prepared ourselves as best as we could, it was still a shock to see Emmy in the flesh.’: Mom gives birth to baby with Pfeiffer Syndrome

“My honest thought when I first saw her was, ‘It wasn’t supposed to be this bad.’ Our doctor didn’t say anything. The nurses were silent. Emmy was silent. It was eerie and terrifying. We know she will always look different and will face bullies in her lifetime, but our goal is to always show her how loved she truly is.”

‘Why isn’t she letting me see my baby? I want my baby!’ Our nurse was stalling, looking for something. But what? I felt sick.’: Mom’s newborn diagnosed with Pfeiffer Syndrome, wouldn’t ‘change her uniqueness for the world’

“As far as we were concerned, we were going to give perfect to a perfect, healthy little girl. Instead, she was born with unusually low ears, a cone-shaped head, and a squeezed brain. NO ONE at our hospital had seen anything like it. I was in shock and kept thinking, ‘Why her? How am I supposed to take care of her?!’ I didn’t feel prepared or strong enough for this. I was grieving the loss of a child, the one I thought I was having.”

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