Wednesday, February 13, 2008

Kristen's Story - 25 Years with CMV

The following is an article that I wrote about my daughter, Kristen born with a congenital CMV infection. I wrote this at the request of Baylor School of Medicine and would like to share it with everyone. If anyone has questions or would just like to "talk" please feel free to e-mail me at Hope this helps.

Kristen’s Story

By Mary Marino

My daughter, Kristen, was born 10:58am on April 5th, 1982 weighing 6lbs 1oz after a full term, non-eventful second pregnancy. I was 33 at the time. When she was first brought to me I noticed her skin was covered with little red dots. The nurse told me it was from the pressure of the delivery and the fact that her skin was so fair.

She cried all the time. Nothing consoled her. At 8 weeks I found she had an inguinal hernia and she was hospitalized the next day. A week later her pediatrician, on a routine exam, found a grossly enlarged liver and spleen. She was admitted to Albert Einstein Hospital in the Bronx and after a liver biopsy we were given the diagnosis of CMV. At that time (25 years ago) not much was known and we were sent home. My pediatrician did some reading up on CMV but there was not much information available.

She responded to spoken words by smiling but had little physical movement. I kept telling the pediatrician that I thought something was wrong because she was not holding up her head or attempting to roll over. At 8 months of age she was diagnosed with a dislocated hip and was referred to a local rehabilitation hospital where she was evaluated as having the physical ability of a 3 month old. She then started physical and occupational therapy and started to respond quickly. We still did not have a definitive diagnosis.

Over the course of the next 6 years of rehab she had 3 hip surgeries and continual physical and occupational therapy. There is a day I will never forget. At the age of 2 ½ I had her at clinic waiting to see the orthopedic surgeon. She was at the point where she would “cruise” furniture and loved to push things. She wanted her stroller so I stood her down on the floor and she took her first steps! I cried because I had my doubts as to whether she would ever be able to walk. She fell down a lot but she always got up again. At the age of 3 I had her enrolled in a special pre-school (luckily in my neighborhood) that specialized in children with special needs. When it was time for kindergarten I convinced the school district to “try” her in regular kindergarten even though she was small for her age and physically challenged. She adjusted very well even though she had teachers that were not trained for special needs children.

At the age of 6 we were told by the school nurse that Kristen had failed a hearing test. Upon referral to an ear, nose and throat specialist and a CAT scan we learned that she was deaf in her left ear and that the CMV had affected the cerebellum (it had atrophied and the surrounding area was filled with fluid) but none of that could be reversed. She received some physical therapy in school but it was not until she was 9 that she was given the help of a teacher of the hearing impaired. That teacher was wonderful and for the rest of her time in school became her “second mother”. Kristen was able to have a second set of textbooks at home so she did not have to be carry books back and forth and she was allowed extra time to move from classroom to classroom.

She excelled in middle and high school and then it came time to think about college. She did not want to go far from home and we were totally shocked when on senior awards day she was presented with a full scholarship to a local college that was literally “down the hill” from her high school! During her college years she decided it was time to think about learning to drive. That was a real challenge. I had taken her out some but I was not the right person to teach her. She enrolled in a driving school and after 6 attempts passed her driving test. That was a definite highlight in her life. She graduated from college in May 2004 with a BA in English and then had the challenge of finding a job. She persevered (with some pushing from Mom) and was offered a job in December 2004 working for a company that processes newspaper subscriptions.

Today she is a happy, well adjusted 25 year old young lady that has overcome obstacles that have been placed in her path with a smile and a will to do the best that she can do

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