"When I couldn't become pregnant for a second time, my doctor placed me on a fertility med to increase my chances..."

I finally became pregnant with my long-awaited second son, Jeb, in April 1999. My pregnancy went along perfectly until right before Thanksgiving 1999. Baby's growth in utero had slowed and my fundal heights were not where they were supposed to be. My physician ordered a TORCH titer blood test to see if something was wrong. It was. The day after Thanksgiving, I received the news that I was infected with a primary CMV infection.

My doctor sent me to a specialist in neonatology and ordered a level 2 ultrasound for me. Baby looked perfect in every way except was just small for gestational age. He had no concerns. My regular physician could not answer my questions and didn't show me concerns either. I did my own research as I am a registered nurse, also. Although CMV could cause devastating effects, the odds were against my baby being born severely affected, thus I did not worry. God would take care of us, after all.

Jeb was born one month later, on Christmas Eve 1999, after a fast labor and 3 pushes. For a full term baby, he weighed only 4 pounds 4 ounces and was 17 inches long. He was the size of a baby doll. He had the appearance of the typical "blueberry muffin" syndrome of cCMV infection. Jeb's skin was yellow from jaundice, purple spots known as purpura and red dots categorized as petechiae, all related to his enlarged liver. A pediatrician was in attendance for his birth and started an IV immediately on my newborn son. The helicopter was then called to transport Jeb to the nearest NICU for treatment, which is a 2 hour car ride away. I had little chance to bond with my new baby as he was whisked away from me within the first hour of his life. Daddy left my bedside to be with Jeb in the NICU and I had to stay in the hospital until morning, when I was discharged to also be with my son.

Jeb's NICU stay lasted 13 days and was full of ups and downs with his life in limbo. We didn't know if Jeb would make it and survive the CMV infection. His neonatologist did not want to make any aggressive moves to fight the CMV ravaging his body because of his extremely enlarged liver. After 13 days of NICU treatment to stabilize him, blood transfusions for blood abnormalities, gamma globulin infusions to fight the CMV, CT scans, MRI scans, lumbar puncture, and ultrasounds, Jeb was sent home with us with a "good luck" from the staff and doctors.

I was in the new-mom state of euphoria as I finally had the second son I had dreamed of. Luckily, I have a husband and parents who were in a more straight-thinking state of mind. Grandma got on the phone to any and every children's hospital she could think of to find a better treatment for our Jeb. When our choices were narrowed down to three hospitals, we chose to take Jeb to Mayo Clinic in Rochester, MN to further his life with treatment they could offer.

At one month of age, Jeb visited Mayo Clinic for the first time. We had an outpatient appointment with a pediatric gastroenterologist and a pediatric infectious disease physician. They took one look at my newborn and decided to hospitalize him then and there for failure to thrive and malnourishment. "How could this be?" I thought to myself as my new baby would eat and eat and had no problems eating or swallowing. Turns out, the CMV was infecting his GI system as well and eating up his nourishment.

Jeb was hospitalized at a Mayo Clinic hospital for one week where he underwent surgery to place a Hickman catheter into his chest to receive IV infusion of Ganciclovir. The Mayo Clinic team of physicians saw no reason why Jeb couldn't receive benefit from Ganciclovir treatment whereas during his NICU stay previously, they were afraid to give it to him. Jeb's Ganciclovir treatments lasted two months and we even took him to Disney World for a much-needed spring break vacation during his Ganciclovir treatment with his physician's smiling approval.

Jeb began therapies with Birth-to-3 early in life. Physical therapy began at age 2 months, with occupational and speech therapy starting at 8 months of age. He was a very bright boy early on, teaching himself how to read at age two, but not learning how to walk until age 2-1/2. At age 5, he was diagnosed with ADHD and takes medication to help him at school. He has also been diagnosed with two specific language-related learning disabilities for which he continues in speech therapy today to help him overcome. At age 7, Jeb was diagnosed with an autism spectrum disorder, pervasive developmental disorder (PDD-NOS).

He continues in our local public school system, in a regular class room, with additions of special ed help, speech therapy, occupational therapy, and adaptive PE. He attends social skills class and life skills class at school where he is doing very well. At age 9, Jeb first began to lose his hearing in his left ear. He wears one hearing aid today with the unknown of where his hearing will actually end up.

Jeb is a happy kid who tells me often, "Mom, I feel I have a blessed life!" And I think he's right.

- Submitted by his mother, Kim