genetic counselor

‘I was giving my son a bath when I noticed 3 little pubic hairs. I got an ominous call from our pediatrician at 6:30 in the evening.’: Mom works to cure son’s Duchenne Muscular Dystrophy, ‘Where there is life, there is hope’

“The doctor abruptly gave Max a quick examination. WHAT?? Our world flipped off its axle. I cried incessantly. The overwhelming feeling of grief felt too much to handle. I said to my husband, ‘If anyone can cure this kid, it’s us! We were chosen to be his parents for a reason.'”

‘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.”

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