Brycen McDonald, a true McDonald baby weighing 3 lb 12 oz when he was unexpectedly born at 29 weeks 3 days, was born on August 1st. Devastatingly he passed away on August 2nd. It was confirmed that Emilie contracted CMV (for the first time) which passed through the placenta and attacked our strong and previously healthy baby boy. Brycey fought so hard during his 36 hours of life, he truly showed a desire to live, squeezing our fingers so hard and tight with his beautiful little hand.
At the last appointment on July 23rd, it was confirmed everything was healthy and perfectly as it should be. This shocking turn of events is absolutely devastating... and we are so thankful to have received such incredible, unwavering support from our family and friends. So, we want to THANK YOU.
In addition, it is shocking and infuriating that we had never heard of CMV until standing in the NICU on Aug 2 hours before Brycen passed away. We are therefore incredibly passionate in raising awareness for CMV and in raising donations for the National CMV Foundation. CMV is the most common viral cause of birth defects and developmental disabilities in the US. Each year, 30-40,000 children are born with CMV resulting in 400 deaths and 6-8,000 children with permanent disabilties, in the US alone! More children will have disabilties due to CMV than other well-known infections and syndromes including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida and Zika. Further, infants are only tested if there is a reason to suspect CMV and a baby must be tested within 21 days of birth to confirm CMV is congenital so there are likely many children that go undiagnosed. Therefore we ask you to consider signing the petition to include CMV on the newborn Uniform Screening Panel at www.screen4cmv.org.
We also ask that you please consider making a donation in memory of our beautiful baby boy Brycen John, our B-Boy, whom we miss every single moment.
Donations to the National CMV Foundation will aid in assisting with their mission to educate women of childbearing age about congenital CMV by:
1. Empowering community networks to facilitate conversation and champion the cause
2. Influencing CMV research priorities regarding CMV prevention, treatment and intervention
3. Working to include CMV on the Uniform Newborn Screening, requiring a CMV test if an infant fails the newborn hearing screening, passing legislation to require medical professionals to educate pregnant women on CMV
4. Advocating for a CMV vaccine
For more information please see our attached pictures or visit www.nationalcmv.org.