Leah - Tennessee
My story starts out like everyone’s. What, When, How, Where, and Why. What is Cytomegalovirus? When and where did I contract it? How did I get it? And the most daunting question, why? Why did I get it? Why does my child have it? Why did my doctors seem to think this was so rare and just couldn’t believe it and turned Leah and I into test subjects for months? Why does my child have to suffer because I didn’t know? Why was I not told the dangers of working in a daycare while pregnant?
Leah “Bug” was born in 2008 a few months after I graduated high school. During my pregnancy we knew something was wrong. Numerous tests later, we were positive for CMV. The only option was to find what we could do to help her or fix her. Little did we know, 2 treatments of ganciclovir given to her through my umbilical cord after I was given an epidural each time later could not fix her? 2 IV treatments of the same given to me would not fix her. The damage was done.
The damage being: a 6 week NICU stay, and NICU discharge of Hospice, epilepsy, deafness, blindness, microcephaly, failure to thrive (a fancy way of saying Leah will eat through a tube the rest of her life) sleeping issues (a way to nuance the fact that I will never get another good night’s rest…ever), Cerebral palsy, brain calcifications, breathing problems: asthma and apnea, more surgeries than I can count on one hand, and more trips to the emergency room that I could have ever imagined.
Bug is now 7 and has not been on Hospice for years. She goes to school, church, interacts and is included in everything we do as a family. All of the issues listed above are our reality. Every day we live with the fear that Leah will stop breathing, have a seizure that she can’t recover from, or not be able to kick pneumonia’s butt one more time. My heart stops every time I see or hear an ambulance when she isn’t with me. I immediately find my phone to see if I missed a call.
The questions over time were answered, what is CMV: A very common and preventable virus that can have devastating effects on an unborn child. When, Where, and How: Probably at the daycare I worked at in high school during a routine diaper change or nose wipe. Why: I got it and Bug suffers because I was not educated. Leah and I were test subjects because my doctors were not educated.
To find out months and years down the road that this virus is common but preventable makes me so angry sometimes, but so happy to know that the education I have received now, can prevent other families for enduring what we have. I thank God every day for sending me this support system that Stop CMV has been to me over the years. Some days are easier and some are harder. But each day granted with Bug is more beautiful than the one before.
--Shared by her mother, Erica