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Amber's Story
"In 2000 I became pregnant with my daughter Amber..."
During a routine sonogram I was told that my daughter's head was too large and some testing needed to be done. I went in for an amniocentesis and by sheer luck, due to the thoroughness of my doctor, a diagnosis was confirmed. I had contracted Cytomegalovirus during my first trimester and my daughter was going to be disabled.
My doctor sent me to a high risk clinic where the the pediatric neurosurgeon took me room by room to show me what I had to look forward to. In each room were severely handicapped children. Some deaf, some blind, some with hydrocephalus, and all with severe disabilities. He told me my daughter would be all of these, if she survived the birth, and he urged me to abort the pregnancy. I was 18 years old.
There is no cure for CMV to this day and there is little being done in the way of research to find one. Every hour a chlld is born with disabilities due to a Congenital CMV infection. However, my choice was simple. She was my baby and I would do anything for her.
We spend a great deal of time at Memorial Hermann Children's Hospital in Houston, TX. Amber has Hydrocephalus and needs a brain shunt to keep her brain from swelling. Unfortunately, she has had quite a few shunt malfunctions. Her shunt has been surgically revised 16 times. Her first brain surgery was at only three days old. It has been a year and a half since her last revision and she is doing great!
Amber also has a seizure disorder. Her epilepsy is well controlled by seizure medication. This is a blessing because many epileptic children have to endure years of seizures before they subside.
Amber has mild cerebral palsy of the lower extremeties. She can walk which is a miracle in itself. Amber is also profoundly deaf in both ears and cannot verbally communicate. We have tried teaching her American Sign Language since she was a baby and she now can communicate with about 15 different signs. In many ways we are blessed. There are so many children born with CMV that cannot walk or communicate in any way.
- Shared by her mother, Roxy