Emily's Story

Emily was born in Philadelphia on January 18, 1999. My Daughter, Kathy, discovered there was a problem with Emily 5 months into her pregnancy. A second level ultrasound resulted in a diagnosis of Hydrocephaly. Kathy was offered three choices: terminate, institutionalize, or keep her baby. She decided to have her baby and was determined to take her home.

Immediately after Emily’s birth an MRI was performed and the diagnosis was changed to Hydranencephaly, with a very grim prognosis. Emily had only 25% brain tissue - - or brain stem. We were told there would be no surgery, as there was no chance of Emily surviving very long. Emily spent the first week in Intensive Care, and then we brought her home. There was no follow-up, since the doctors said Emily would die within a year.

When Emily was 5 months old a social worker thought it was time to get Early Intervention involved. Emily now has a network of therapists who visit regularly. The home-care nurse was stopped because Emily was doing so well we didn’t need her anymore!

In the past year and half Emily has continued to thrive and become more alert. She loves her musical toys, the sound of our voices, playing and cuddling with us, and eating like a big girl. Emily’s first 6 months were spent on a feeding tube. Then my daughter decided to try the bottle. It worked after much trying and persistence. Now we puree all Emily’s food and she is able to eat orally.

Her reactions to everything around her continue to become more developed. She is a very happy little girl who smiles throughout most of the day, and sleeps like an angel at night.

Emily has many of the same problems associated with Hydranencephaly: no head control, high/low body temp, impaired vision and hearing, and takes Pheno to control seizures – but this is a far cry from the grim prognosis we were given back in 1999. Emily continues to be the highlight of our day and brings immense joy to all who know her. We adore her. My Daughter tells me every day how lucky she is to have a child like Emily. We both feel we are in the presence of a living Angel.

Darcy (Grandy to Emily)