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Kilee's Story
"My name is Elena, I'm from Tucson, Arizona and I'm a single mom of Kilee, 13 years old..."
She had every imaginable sign of congenital CMV at birth. It all started my 28th week of pregnancy, she stopped growing and my doctor thought she was going to be a small baby due to my short stature. She was diagnosed as IUGR (intrauterine growth retardation- small for gestational age). They did repeat ultrasounds -everything looked good, also had stress tests/monitoring done and those were good. So they kept on eye on my progress, eventually about 1 month prior to my due date I was put on bed rest.
My labor was induced the night before delivery, progressed slow, her heart rate dropped with every contraction, so by the next a.m. they decided on an emergency C-section due to that and meconium when they broke my water. When she was born she had pretty much all visible signs- "Blueberry muffin rash", enlarged liver and spleen, low platelet count, microcephaly, and a small amount of blood or fluid on the outside of the brain (can't remember for sure which it was). My doctor knew right away that it was CMV, though he said he hadn't seen it in over 10 years.
Kilee was rushed to the NICU at another hospital in Tucson, where she stayed for 3 1/2 weeks. The nurses told me she had a 50/50 chance of survival. With lots of hope and prayers and good treatment by the doctors and nurses, she did just fine. Her first year was spent having MRI scans about every 3-6 months, appointments with specialists, and therapy (Speech, OT, & PT) starting from around age 3-4 months until age 5. Around age 2 or 3 she was diagnosed with mild Ataxia CP, mild hearing loss both and left and right (now wears a hearing aid on the right side). She crawled around 10 months old and walked around 18 months.
Now at 13 she's your typical teenager- attitude & all. The only problems she has now are educational disability- main problem area is math and reading but doing pretty good. She has been delayed since birth- more noticeable around early elementary age. Hearing loss is monitored every 6 months with the audiologist, vision is checked yearly- no signs of CMV. Her CP is still noticeable at times, but she no longer sees the orthopedic doctor or therapists.
I thank god for giving me my miracle, and all the therapists- if it wasn't for their hard work and dedication, she wouldn't be where she is today. I also thank my family and friends for their support throught these years. It was tough being a single mom since her birth and going thru what I did. I'm also glad that I connected with the CMV Registry at Texas Children's Hospital- being able to get in touch with other families affected by CMV. Thank you for letting me share my story.
- Shared by her mother, Elena