Our family’s journey with congenital cytomegalovirus has been somewhat different than many we’ve heard. An abnormality was detected on the ultrasound the day we were set to learn Aedan’s gender. It was at that point we were given a list of diagnoses it could mean, while also told it could be nothing at all, suggested to see a geneticist, and asked to select which testing we wanted based on that information— a whirlwind, to say the least. After educating ourselves on CMV because we had never heard of the virus, we learned that my risk for it was high because I was a preschool teacher. I was tested and it was concluded that I had CMV during my first trimester. Aedan was born healthy, just four days shy of his due date. He failed his hearing screen at the hospital and remains partially deaf, but we were aware that it was a possibility. With such early knowledge, we have been able to give Aedan every single opportunity for success with specialist interventions from the very start. Congenital cytomegalovirus is a crushing, devastating diagnosis for so many families. Perhaps if more emphasis was put on the severity of it, how easily it is contracted, and the simple prevention measures during prenatal care, we could see a dramatic decline in cases. For now, let’s start by giving cCMV babies a fighting chance with universal screening at birth.

-Amanda & Tim


Holden James Keenan was born on April 11, 2020, at 3:23 AM at 30 weeks and 4 days gestation. Holden passed away at 5:59 AM the same day. At my anatomy scan the doctor said my baby had fluid in his stomach and requested I get an amniocentesis, which unfortunately came back as positive for CMV. From this point on we had countless appointments: MRIs, blood work, sonograms, a procedure where a 22 gauge needle is placed into my uterus and his stomach to drain the fluid, all in hope his lungs would continue to develop. I also started taking Valganciclovir. I knew the odds were not in his favor when they found it mid pregnancy. My doctor said he had a 5% chance of survival in the womb and didn’t think he would survive delivery. At my 30 week appointment my doctor was shocked that he was still kicking, moving with normal heart beats. 4 days later he was born, then later passed. The doctors did all they could to save him but he was almost 100% reliant on oxygen. I know he is no longer in pain and at peace. I wish I knew about CMV and had testing so this could have been prevented and my son could have been here with me today.

-Amanda Keenan (Natick, MA)