Hello, my name is Kristin and I'm 24 years old. My husband Greg is 30, my daughter is 6 1/2, and my son is almost 5. My daughter BaiLee was born with CMV. I had a normal, full term pregnancy and a perfect delivery. We thought we gave birth to a healthy baby girl on October 15th, 2004. We later learned otherwise.
First, the first 2 1/2 months of BaiLee's life we spent most of it in our local hospital. She kept getting constipated and impacted colon. Our family doctor finally sent us to Wichita, Kansas. It is about a 5 hour drive, although I think that was the longest drive of my life. He thought BaiLee had a colon disorder. All they would do was biopsies for it, and if she did have it, it was a simply, fast, easy surgery. We were kind of scared, but had no idea what we were in for. We finally got to the hospital about 1 am. They escorted us up to Peds, and did their normal check in for a baby. Weight, length, head size, etc. Then several more people came in and measured her head. I can not explain the feeling that came over my soul at that moment, because I knew then that there was something seriously wrong.
Over the next several days, my daughter underwent every x-ray, blood test, and any other test you can imagine. To watch your child go into all of these machines, and blood work, and wires, it is so overwhelming. Eventually, BaiLee was diagnosed with CMV. The other symptoms that go along with it are Cerebral Palsy, calcium deposits on her brain, she is completely deaf, and has an undiagnosed seizure disorder. My daughter had a cochlear implant put in when she was only 2.
My son was born in July of 2006, and he was negative for CMV. I had took Davin with me and my mom to go see my brothers for a weekend trip. Greg called me the second night we were there and said BaiLee kept getting stiff and shaking. My daughter had 9 seizures in a matter of 3 hours. My mother rushed us back to get to the hospital. We learned that BaiLee was having seizures, but they did not know why. She was put on medication to control them.
Later, she stopped gaining weight. They placed a peg tube in her when she was almost 3, because she was aspirating. 3 months after they placed her peg tube, my daughter had a major double hip surgery. 3 years later, they had to do the surgery again. My daughter is 6 1/2 years old and has had 3 major surgeries, 1 minor surgery, and is on multiple medications. Surgeries, doctors appointments, medications, feedings, and fear consume my family's lives.
Most of the doctors that we went to in the beginning had never even heard of CMV, and neither had anyone that we know. Now they do, and now you do. After reading our story, and the story of so many other families, why would you not do anything to help stop this vicious cycle. The power of one person, could make all of the difference for hundreds of people like us!
- Shared by her mother, Kristin
Posted: 12/27/2016 10:11:35 PM