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Madison's Story
"My daughter Madison was born on August 1st, 2000..."
She was three weeks early and weighed in at 5 pounds 5 ounces. She looked like a little baby doll when she was born. We had no idea what kind of journey we would have with her. I had an uneventful pregnancy with her. I had an older daughter, Morgan, who was 20 months old when Madison was born. I did not feel any different about this pregnancy than I did with my older daughter. I did catch the flu or so that is what we thought it was early in my pregnancy. My older daughter was in several play groups including Gymboree Play Program. Looking back I can't help and think that this is where I contracted the CMV virus.
There was no indication that Madison would have any health issues during my pregnancy. She was measuring correctly for her age and there were no issues with the ultrasound to show any problems. When she was born she looked like she had red dots all over her body. We would later discover this was called petachea. The doctors immediately took her away without any explanation as to why. I had given birth just 20 months before so I knew this was not the normal procedure. After several hours of no answers the doctors came back in to tell us that didn't know what was wrong with Madison but wanted to keep her in the NICU until they found out. They had her hooked up to an IV and were administrating antibiotics to her. Due to the petachea she had low platelet counts. When I went to see her all hooked up to tubes and heart monitors it was not a wonderful site of your newborn. I had nursed my previous daughter and I wanted to nurse Madison also. She had no issues with feeding. She was in the hospital for three days. When she came home she did great, but she was very colicky. I wonder now if she was in pain and just couldn't let us know any other way. Our pediatrician called us several weeks after she was released to let us know that Madison tested positive for a virus called CMV. We had never heard of this virus before. He had us make a doctor's appointment with an infectious disease doctor in our area. When we went to visit Dr. Murphy he had us have a CT scan on Madison's brain and also a sonogram of her kidneys. Her sonogram came back normal and her CT scan showed some gray areas but no calcifications. Madison had also had an ABR and failed the test for her left ear. She had 100 % hearing on her right but profound hearing loss on her left.
Madison has been in speech since she was two years old. Her hearing has not changed on either ear so we are thankful for this. At least she has 100 % in one ear. She has adapted to this impairment. She has the best attitude of all my children. I have always put her in activities to help her with her low muscle tone. She has to work twice as hard as most kids but she just keeps on going. She has had other health issues which we don't know for sure if they are CMV related and most doctors know so little of the long term effects of CMV. She has precious puberty which basically means she was going into puberty prematurely. She has had to have a hormone implant to prevent that from happening. She also had a flu vaccine which triggered her to contract Acute Disseminated Encephalitis. She was hospitalized for 6 days last year and had to be on high doses of steroids. The neurologist said at first that the lesions on Madison's brain could also have been from the CMV infection but could not say for sure. That is the problem also with this virus. The doctors do not know much about the effects long term for our children.
She is now a healthy ten year old little girl. I feel so guilty sometimes that because of this virus that I contracted she has had to fight for everything her entire life. She knows all about the CMV virus and will tell anyone who asks her why she can't hear out of one ear. I hope that in the near future there is more information for women who are pregnant or going to become pregnant to be aware of this virus. We are tested for all other birth defects but CMV. I feel very lucky to have Madison in our lives. She has the best personality. She is so witty. I know that God has great things planned for her. But I just hope that other families do not have to go thru what all CMV families have to go through.
- Shared by her mother, Tara