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Chelsea's Story
"Chelsea was born 3.5 weeks early with classic signs of severe cCMV..."
She had the usual symptoms of petechia, enlarged spleen, enlarged liver, moderate hearing loss, irregular brain structure, microcephaly, but was basically healthy at birth. Later she was diagnosed with severe spastic quad cerebral palsy, legally blind (CVI), epilepsy, and acid reflux. She had hearing loss on left side that progressed to the profound/severe range. She was non-verbal, non-ambulatory, and couldn't communicate.
Her body seemed to grow normally, but her physical abilities and cognitive development did not advance past the 3-4 month old stage. She developed epilepsy at age 10.5 months, and it was not helped much by lots of different medications. She was basically happy and healthy her first 3 years despite her severe limitations, but deteriorated rapidly in her 4th year. She developed reflux and ulcers, and was predicted to soon have fundoplication, hip dislocation, ankle cord, and scoliosis issues.
Eventually, she refused to eat or drink, probably because of scar tissue blocking her esophagus (we learned later). She passed away painlessly and peacefully at home three days before her fourth birthday. Our family was devastated and is still heartbroken 10 years after her death.
- Shared by her mother, Tina