Angel 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)
Emily passed away on December 11, 2007