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Joey's Story
"Our story may give many of the newly diagnosed families much hope and faith. Our Journey with this virus was not an easy one, but the outcome much less severe than many others...."
The year was 1998 and I was working as a Registered Professional Nurse in a maternity center at a large university hospital and a Independent Pediatric home care provider to compromised children and infants. This was my second pregnancy and my only child was 11 years old. The pregnancy was very complicated from the beginning. I was diagnosed with ulcerative colitis at 25 years old and was told not to get pregnant again. My colitis was a bit unstable, but I decided to make a go of it anyway. It was my second marriage and my husband had never had children. I so wanted my son to have a sibling.
I was hospitalized at 20 weeks after spending a week visiting my family in Virginia. They were all sick with an intestinal virus. This made my colitis more unstable and I never bounced back from the virus. I was placed on multiple medications including high doses of steroids. My immune system was on overload and compromised.
At 31 weeks gestation I was shopping with my son for school shoes. My legs felt very tired and I started having severe joint pain. I went home and had a temp of 104 degrees. We immediately went to the hospital where I would spend the next three weeks hospitalized. I ran high fevers for 10 days and it was initially suspected that I was having a intestinal problem with my history. Rheumatology, infectious disease, Gastroenterology and OB ran multiple tests. At one point they were going to deliver me at 32 weeks if my fever did not break. It did the night before and I went on to carry to term. As I look back I realize how blessed we were that Joey carried to term. He would have been so much sicker if he delivered at 32 weeks.
This was the first time that I heard that I was CMV positive and this is where my fevers and severe joint pain originated from. As a health care professional I knew of CMV, but never knew the devastating effects it can have on a unborn child. It was never taught in school or ever mentioned in hospital orientation. My OB did not test me for it even though he knew I worked with children.
I was discharged from the hospital at 34 weeks and put the whole experience behind me. The internet was in its infancy so I never did any research on the topic and my OB never said it would be a problem post delivery. I was ten days past my due date when we decided to do a c-section. Joseph was born on 9/24/98 8lbs 5ozs, 20 inches long. It was a complicated delivery in which he had a bowel movement at the time of the delivery indicating stress. This is called a me conium delivery. He initially recovered and was sent to the newborn nursery where he began to have a difficult night. His breathing was irregular and NICU was into see him four times that night. After fifteen hours he was transferred to intensive care where he spent the next month. He was unable to wean from oxygen and this is when medical team started testing him for various infections. I requested a formal meeting with the doctors. They were unaware of my diagnosis of CMV during pregnancy, a lack of communication in many ways.
He looked sick and was covered in a rash which I would later find out was a complication of CMV. He was diagnosed with CMV pneumonia and had positive CMV titers. I immediately thought it was transmitted during breast feeding , but was told it was transmitted during utero. Upon discharge from the hospital we were told the devastating effects of CMV. We were handed this beautiful child and the words we heard are still so painful today to even think about. He could be deaf, blind, micro cephalic, mentally retarded or even die due to complications of CMV. I felt so alone with all of this information.
This is when I began my research about the virus; the more I read the more upset I became. I contacted the CDC in Atlanta and was told there was a study but it no longer existed due to lack of funding. I was then put in touch with a ID doctor at Columbia Presbyterian who told me about a study using anti-viral medication, but Joey was too old for it. No other information was given to us. I kept saying to myself he needs to be in a study, he needs to be followed. Again I felt alone.
At this time my husband and I just wanted to be parents and love this little boy no matter what the outcome. We focused on his delays putting CMV in the back of our minds and just enjoy him. Joey started physical therapy at five months old and speech therapy at eighteen months old. He was diagnosed with apraxia a speech and motor coordination disorder which is rare. I later found out at the 2008 CMV conference that it is one of the effects of CMV. The earlier apraxia is treated the better the outcome. Joey had an awesome speech therapist that had a gut feeling. She called in oral motor occupational therapist to work on feeding issues. Joey did not start to speak fluently until the age of four. We were fortunate to live in NY where the services are great and he received therapy five times a week.
He was sent to a special education preschool at three years old five days a week for two years. He was then sent to special education kindergarten and first grade. He was always exceptionally bright and scored well on the developmental tests, but was having difficulties following multi-step directions. This is when at the age of six we placed him on ADD medication. We were both against medicating our child, but knew it was our only chance of getting him in a regular class. Within two weeks of being on medication he was successfully mainstreamed to a regular class. We retained him in first grade since his speech was so late and had a late birthday. This was the best thing we could have done for him. At this time Joey is in the sixth grade in regular Ed classes with resource support and still on medication. There is a story I always tell about Joey that should give many parents hope. He was unable to blow out his birthday candles until he was five years old due to oral motor weakness. He is now playing the trumpet for the past three years and quite good at it.
At twelve years old he knows he is a little different and gets frustrated because he is not athletic and coordinated. He finally learned how to ride a bike and tie his shoes which was so exciting for all of us. He knows about the other children with CMV and has met many of them at events. He realizes how fortunate he is that it could have been much worse. We will never know if my infection was a primary infection or a secondary infection.
As I close this story I want to thank Dr. Gail Demmler, because of her CMV registry I am now linked with a bunch of amazing families. About seven years ago I was researching a birth defect for a patient and stumbled on the registry. I could not believe that the registry had been available when Joey was born and none of the professionals I spoke to knew about it. I now do not feel alone and isolated, I have a CMV family. The Stop CMV Action Network and the mother who established this foundation has motivated me to spread the word. Prevention and awareness is the key. I have hosted a public awareness forum at the hospital and have spoke to many of our doctors regarding testing, treatment options, and the research that is being done with CMV. My husband and myself stopped being quiet about this virus. It is our goal never to be quiet again.
- Shared by his mother, Darlene