Impatiently we waited, like many parents before us, for the birth of our first child. The excitement grew each day more and more since we first found out Hillary, my wife, was pregnant with our first baby.
At only 15 weeks, doctors told us something was wrong. The wonderful miracle growing inside my wife’s stomach was sick, very sick. They told us the baby had something called Trisomy 18. Than the doctors asked us the most difficult choice any parents would ever have to make. To abort the baby or let it live? We could not believe what they were asking us! Yet than they told us the facts…
Trisomy 18 occurs when there are 3 copies of chromosome 18 instead of the usual 2. Trisomy 18 can show it self either as full or mosaic. In simple terms, full means a person's entire body is effected where as mosaic means only parts of the body is effected. (Which parts are anybody's guess.) There is currently no cure for this disorder.
If we decided to keep the baby, there was a chance it would never see the light of day and be born into heaven (meaning it would be still born) ….
And babies with Trisomy 18 rarely see their 1st birthday….
We spent two whole days thinking about our decision and after the two days of pulling our hair our and lots of tears we came to our choice. The best choice we both could ever make. We chose LIFE….
The next few months were extremely hard. Doctors monitored my wife constantly, every moment we feared the worst…
Yet finally the day came. My wife gave birth to a baby girl on March 9, 1996. It was the happiest day of our lives. The baby was so precious, and most definitely priceless…
We knew than that giving her the chance to live was the best choice for our family.
Aliva Elizabeth Lee weighed only 3lbs and 4 ounces. She was 17 inches long. Aliva had dark brown hair and deep brown chocolate eyes.
Because Aliva had Mosaic Trisomy 18, she had many problems in her short life.
Trisomy 18 causes Mental retardation, micrognathia,
rocker-bottom feet, congenital
heart disease, flexion deformities of fingers,
Aliva had all of these.
Our Aliva could do very little. She had to be feed by a tube inserted into her stomach. She never was potty trained, and from day one wore diapers. YET…
She could smile, and roll over..
and walk a little with help (walker, mom and dad‘s hands, crutches) and boy…oh…boy she swam like a fish. Our Aliva was a mircle. She showed us love, and most of all life. Aliva taught us how to love.
Aliva spent two wonderful and memorable years with us. Two years we will never forget. She out lived doctor’s expectations. She was our strong little girl, and we were so proud.
Aliva died on April 3rd, 1999 when her tiny heart finally gave out. She was two years and 3 weeks old. Not a day passes when we do not think about her. She was our princess…our little
Momma and Dadda Love You Aliva