Tyler - Louisiana

Tyler - Louisiana

In the summer of 1995 of I was thrilled to find out that I was going to become a mom. My life was about to change in so many ways, not only was I expecting a child but I was about to graduate college and embark upon my career. I was nervous and excited anxiously awaiting my new life.

On February 19, 1996, my life changed forever. As I was undergoing a routine non stress test and ultrasound, my obstetrician discovered that the baby was microcephalic and that I had a growth on my ovary that had taken over the whole left side of my pelvic/abdominal area. He stated that my baby had some abnormalities and could be born anencephalic and that he would be transferring me to another hospital that was more equipped to handle high risk deliveries. 

On February 20, 1996 at 12:06 am I gave birth to a bouncing baby boy that I named Tyler. He was healthy despite being microcephalic. In fact he was being sent home with me on the third day and was going to under outpatient diagnostic testing. However, Tyler was not tolerating the formula and also had an episode of apnea and was transferred to the NICU. While he was in the NICU he underwent testing to diagnose his condition (lab test ultrasound of the head etc.). Tyler was such a strong baby he was released from NICU after three days and ten days after delivery he came home on an apnea monitor.

We received the results of the tests about 2 weeks after he was discharged. The ultrasound showed that he had calcifications on his brain and lab reports showed that he had congenital CMV. I didn’t have a clue about what we were dealing with as there was little to no information out there about the condition. Tyler progressed normally and remained healthy always happy, smiling and laughing until the age that most babies start sitting up on their own and holding their own bottles.

The age of two was a turning point for Tyler health wise, eventually developing reflux and aspirating on his feedings causing aspiration pneumonia he also started having seizures. He underwent his first surgery, nissen fudiplication and g-tube placement. Other surgeries he has had include orchiopexy for undescended testicles, adenoidectomy, tracheostomy (mechanical ventilator at night) for chronic respiratory failure /obstructive sleep apnea and spinal fusion for scoliosis. He is scheduled for an anterior femoral head resection for hip dislocation in July.

Despite all of his health issues, Tyler is a happy fun loving 17 year old. Sometimes he even has that teenage attitude rolling his and giving me looks when he’s not satisfied about something (if he could talk I’m sure he would have a few choice words for me)  LOL!. He enjoys attending school, church functions and spending time with the family. He enjoys going for rides in the car, bubbles, music, watching kids play, watching his favorite TV programs and movies (Barney, Sesame Street, Rugrats, SpongeBob, Shrek, Home Alone, Problem Child, Rush Hour and New Orleans Saints football games). He has and infectious laugh and smile that would brighten even the darkest of days. Life would not be the same without my Angel. We are blessed to have him in our lives!

- Shared by his mother, Misty