birth defect

‘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.”

‘You shouldn’t own a nice truck like that if you’re asking for help with medical funds.’ They don’t know about the 8 appointments a week.’: Mom to two medically complex children says ‘we are not going to stop our lives’

“Sophia often passes out. Her lips turn pure white and she vomits for 30 minutes. She injures herself, others, and pets. Her brother performs injurious behaviors too. It is a daily struggle with feelings being hurt and many tears shed. Everyone always says, ‘I don’t know how you do it.’ It’s simple. I do it because it’s what is best for Sophia and Grason. We are not going to stop our lives.”

‘The doctor said, ‘I don’t want you to think everything is okay. It’s not. Your baby’s hands are fused together,’ then left the room.’: Mom to son with Apert Syndrome urges for kindness, ‘It’s the best gift you can give’

“‘I’m sorry, but he will definitely have mental issues and live in a home.’ The doctor told me to go home. The second I made it to the car, I lost it. I was crying uncontrollably. I called my husband, but I couldn’t get anything out. ‘Ashley, I need you to PULL OVER. I’m coming to get you.’ I couldn’t, I was so distraught. I just wanted to get home where no one could see me.”

‘What’s it like being a little person?’ I was touched without my consent and forced to apologize. I was so naive.’: Woman with Achondroplasia urges ‘I’m not a little person, I’m not a dwarf, I’m just Chandler’

“For so long, I thought the compliments were genuine. People would brag about how smart my brother was and be in awe over my sister’s art, while I got a pat on the head for just being…me. When I’d move my head out of the way and say, ‘Don’t pat my head,’ I got, ‘Your daughter shouldn’t talk to me like that. You should teach her manners.’ If I said ‘no’ when being asked if they could shake my hand, because they ‘always wanted to shake a little person’s hand,’ I was ‘rude.’ I felt trapped.”

‘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.”

‘They blurted out, ‘Omg, look at IT!’ Children ran up with cell phones, loudly yelling and recording me. I left the store traumatized.’: Woman with dwarfism shares unique journey

“When I wake up every morning, I don’t look in the mirror and see dwarfism. But I know once I step outside the door, somebody will remind me. A common question is, ‘What do you want to be called? Dwarf, little person, LP, midget?’ I would like to be called Amy, because that’s my name. At the end of the day, I want people to remember who I am, not what I look like.”

‘Be careful not to startle him with sudden sounds.’ ‘A loud sound could kill our boy?!’ We were terrified.’: Baby boy with extremely rare LQT Syndrome, Microcephaly, Deafness defies all odds

“While rocking Azariah to sleep for his nap, he went stiff in my arms. I turned the light on and things changed drastically. He started to convulse and foam at the mouth. I ran downstairs and called 911. Two minutes went by and he was turning blue. I lay him down and gave him 3 breaths. ‘How in the world did this happen to OUR son, why OUR son?’ No one else in the world was known to have the same genetic deletions.”

‘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.”

‘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.'”

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