My Son Has a Rare Syndrome. So I Turned to the Internet.
Briefly

The article describes a pregnant woman's experience at a routine ultrasound that takes a troubling turn when the technician detects abnormalities in her baby's development. After hours of scanning, the doctor reveals concerning signs, including the baby's rapid growth and protruding tongue, suggesting a potential diagnosis of Beckwith-Wiedemann Syndrome. This overwhelming and surreal moment shifts the woman's anticipation of motherhood into uncertainty as she faces the implications of the disorder and the need for further medical evaluations.
I had reported to the doctor's office for a routine scan, but as in a dream, the routine kept repeating. I watched the technician map my baby's face for secret reasons.
The doctor rapped on the door. He told me that he had seen something he did not like... The baby was growing very fast. The tongue was protruding from the mouth.
Read at www.nytimes.com
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