"After having our first child at a very young age, we knew that when we decided to try for a second child we were going to do everything right..."

We waited six years. We had our careers in order, we were financially more prepared. We were healthy. We were so excited to learn I was pregnant. Because our first child had some complications, (not related to CMV) we were sent to a High Risk OB just as a precaution. We were told everything was good and not to worry. At 10 weeks into my pregnancy I got very sick. I was told that it was just a seasonal viral infection and once again we were told not to worry. After about a week of being sick I began to feel better and did not give it another thought.

At 20 weeks I had my routine ultrasound and found out we were having a girl. She was completely normal with no areas of concern. We were so excited. By 32 weeks I started feeling like she wasn't moving as much as she had been. My doctor ordered another ultrasound and she didn't appear to have grown much since the last one but was still considered "within the normal range." At that point I began weekly Non Stress Tests to monitor her movements and heart rate. The tests showed decreased movements although her heart rate remained steady and normal.

At 35 weeks another ultrasound was ordered. It showed she was tiny. She had not grown at all since the last ultrasound. She was only measuring at 31 weeks. She was found to have enlarged ventricles in her brain. I was diagnosed at that time with IUGR (intrauterine growth retardation) of unknown causes. Another Specialist was contacted. After he reviewed all my ultrasounds and tests it was decided that the best option was to schedule a C-section the following day. The doctors didn't know if she could handle all the stress of labor. My first child had been born via C-section. We were very disappointed because up until this point we had planned a natural birth. However, we wanted what was best for her.

There were so many doctors and nurses in the room when we were wheeled in for my C-section, it was very scary. I remember when they delivered her. The doctor said "it's a girl." That was followed by silence. They held her up for me to see her and then they took her out of the room and into the NICU. Her eyes were open but she did not cry. She did not make a sound. She looked beautiful. She had a full head of black hair and she looked perfect. She just looked tiny. That was December 16, 1998. We named her Chloe Jordan and she weighed 4lbs 6oz. She was 16 inches long. I remember thinking how could someone who looked so perfect possibly have anything wrong?

After they finished with me, they took me back to my room. She was in the NICU having multiple tests done. I felt so bad. I wanted nothing more than to be with her. Finally, in the middle of the night I was able to be wheeled down to the NICU to see her. I remember that first time seeing her as if it was yesterday. She had an IV sticking out of the top of her head. She had tiny little band-aids all over her feet from all the blood tests. She was covered with petechiae (broken blood vessels) from having such a low platelet count. However, she did not need help breathing and was able to feed well. We thought that she was just small and she would be fine. We couldn't have been more wrong.

The doctor said that they were running tests to confirm a diagnosis of CMV. In the morning, he told us that her CT scan showed enlarged ventricles in her brain, multiple calcifications and cerebellar atrophy. He said her platelet count was dangerously low and we could lose her from that. They told us that she could start bleeding and they might not be able to control it. We were so scared. Then, she seemed to turn the corner. She appeared to be getting healthier.

On Christmas Eve, we went to the hospital to hang a stocking on her isolette. I decided to change her diaper. When I opened it, it was full of blood caused by internal bleeding. It was the scariest moment ever! Our baby girl was then diagnosed with NEC (necrotizing enterocolitis). She had an nasogastric tube placed and I had to stop nursing her. She was so weak she couldn't open her eyes. Her weight dropped down to 3lbs 8oz. She had multiple blood transfusions to replace all the blood she was losing. Slowly day by day she got stronger. After 5 long weeks, she was finally able to come home.

She had failed her newborn hearing screening and had to see a Specialist. She was found to be profoundly deaf in her left ear. An Opthamologist also diagnosed her with Cortical blindness. She started therapy as soon as she came home. She didn't make any progress. She cried for about 20-22 hours a day. I thought I might lose my mind. It was so hard not being able to help her. At 4 months of age she began taking Baclofen for her spasticity. Her crying stopped. She also had severe reflux and began taking medicaton for that too.

She did not feed well. It took about an hour and a half for each feeding. She didn't gain weight. At the age of 3 she was diagnosed with failure to thrive. We had to add powdered calories to her feedings. Still she did not gain weight. Finally when she was 4, we agreed to have a G-tube inserted. Slowly she started gaining weight. We are still trying to control her reflux.

At 18 months of age, she started having seizures. She was put on seizure medication. They continued to get more frequent. Two additional seizure medications were added. Still she continued to have seizures. She had about 25 seizures a day. When she was 6 years old, we had a Vagal Nerve Stimulator implanted. It has helped but she still continues to have about 4-5 seizures a day.

Chloe is now 10 years old. She is severely impaired. We have been told that she is the most severe case of CMV that the doctors in our area have seen. She is unable to walk, sit or even hold her head up. She is profoundly deaf on one side and is completely blind. She has severe reflux and is tube fed. She continues to have seizures daily. She takes 9 medications a day for her various problems.

Despite all this she is the sweetest little girl. We feel so thankful to have her. She has taught us so much about adversity and taking things for granted. She is such an important part of our family and we cherish every day we have with her.

- Submitted by her mother, Amanda Mangett