Rory was symptomatic at birth with Congenital CMV (Cytomegalovirus)

It was diagnosed early in pregnancy (at 24 weeks) that Rory likely had contracted a congenital CMV infection. CMV was something mom had never heard of before but apparently is pretty common, yet uncommon in our unique circumstance, for mom to get for the first time while pregnant, and pass on to the baby and for the baby to have signs pre-pregnancy. 

Below is a little bit more about the infection Rory contracted and what we know about it and our specific CMV situation.

• There were abnormal findings in the 20 week ultrasound for Rory (fluid in baby’s brain, calcifications on the brain, bright bowels, and hydrops – large amounts of fluid built up in baby’s abdomen)

• With that the doctors ran some bloodwork and discovered mom contracted a primary CMV infection and likely passed on to the placenta

  • CMV is common – 70% of kids in daycare are carriers and by the age of 5, 1 in 3 kids have contracted it

  • 60-80% of Adults have contracted CMV by the age of 40

  • Most people with CMV have no symptoms and aren’t aware they’ve been infected.

  • Once CMV is in a person’s body it stays there for life

  • What was rare in our case, was mom contracting the virus, for the first time, at age 34 while early in pregnancy, passing the virus on to the placenta

• 90% of babies with CMV are asymptomatic at birth, With Rory showing signs already at 24 weeks in her ultrasounds, we knew it was likely she’d be in the 10% that were symptomatic at birth.  If she could make it to birth – as many babies who show early signs in ultrasounds end up still born or passing naturally in utero. Especially concerning was all the fluid build up (likely caused from her body trying to fight the infection) many babies don’t survive past the fluid sitting with them for that long, compressing on their lungs and other organs.

• After having 2 ultrasounds a week for 3 months – Rory surprised the doctors and stayed stable from 20 weeks to 37 weeks. With her heart continuing to beat strong, and the fluid in her belly still there, but staying stable. The doctors remained concerned about little growth in Rory’s head and developmental milestones they were not seeing in her ultrasound in her brain.

• Week to week Rory surprised the doctors with her strength to hang on, and by staying stable , continuing to move, and continuing to have a strong beating heart!

• At 37 weeks Rory was born – and showed many of the visible symptoms at birth for CMV such as , small head size (microcephaly) , jaundice skin, a blueberry muffin skin rash called petechiae, enlarged liver and spleen, low platelets and all the fluid (asides) in her abdomen. 

  • Statistics say 75% of babies like Rory will experience major neurological and other challenges as they grow, such as hearing loss, vision loss, nutrition, growth, cognition, learning challenges, and motor/muscle tone, cerebral palsy, mental disabilities and more.

  • Every baby’s situation is different. We continue to pray for Rory , for positive outcomes, for fighting off this virus, and for continuing to develop and thrive!

We are early in this fight, but impressed with how strong Rory has been thus far, and how much God has continued to sustain her life as we have cried out to him in prayer. We continue to petition to God in prayer for her health, for healing, for positive outcomes, for a body that can function and thrive and overcome all these challenges! The road ahead is going to be long, but we are hoping and believing for a little girl that continues to fight and beat many of the odds in her situation!

Learn more about CMV at www.nationalcmv.org