Blog

The Birth Deck: Q&A with Sara Lyon

Author: Kristen Spytek & Sara Lyon It’s OK to feel contradictory emotions simultaneously. Life is dualistic, it is dark and light at once, it is pain and beauty in the same instant. Having gratitude and anger in the same breath is normal and honoring that reality is extraordinary. When we encounter great challenges and allow ourselves to feel everything without judgement or resistance, we can thrive in the aftermath. 

The Ohio CMV Advocacy Project

In May, National CMV awarded the public health awareness mini grant pilot to The Ohio CMV Advocacy Project. We’d like to share their experience in hopes of inspiring others to begin advocating for CMV awareness, on behalf of and in partnership with National CMV, in their state.

Dancing With Shards of Glass

Author: Andrea Stambaugh A few weeks ago we went to The Kids Equipment Network to pick up an adaptive stroller/wheelchair for Axel. 

I have been fighting to get Axel a wheelchair for months. I had prepared myself in my mind. I was so excited for getting out of the house to be simpler. We talked about it the entire drive. Once we got there, they wanted us to put Axel into the wheelchair so they could fit it appropriately. I set him in the perfectly supportive bright green chair and I strapped him in. He looked up at me with a big smile, the way he always does. I smiled back. But, then it hit me. Like a ton of bricks. I just strapped my child into a wheelchair, for the first time. And I lost it.

The Baby After the CMV Baby

Author: Megan Nix My husband and I always knew we wanted a third child, even after our second daughter, Anna, was born with congenital CMV. Even though Anna’s needs (deafness and motor delays) require more time spent in therapies and doctors’ offices than we ever expected, Luke and I both came from bigger families, we wanted to gift our daughters with another sibling, and, I have to admit, I wanted another chance at a typical experience of pregnancy and motherhood.

A Mother's Fight: Maine's CDC CMV Recommendations

Author: Laura Sweet LD 87 was referred to the Legislature’s Joint Standing Committee on Health and Human Services and a public hearing and work session took place in February 2017. The whole process moved much more quickly than I anticipated. We gathered other families and supportive members of Jane’s medical and early intervention teams to testify alongside us. The Committee voted not to pass the bill, but with the understanding that the Maine Center for Disease Control and Prevention (CDC-P) would convene a multi-disciplinary work group to review issues surrounding congenital CMV and make recommendations to the Committee within a year.

Meet the Founders: Kristen Hutchinson Spytek

Kristen is the current President of the National CMV Foundation. Read as she recounts her personal journey along with pertinent CMV information from her guest blog on MotherToBaby.org: "CMV. The Most Common Viral Infection Affecting Newborns That You've Never Heard About".

How family and friends can support loved ones affected by CMV

​There is a very old saying that goes, "It takes a village to raise a child." When that child has special needs, this is especially true. Family and friends are a critical part of life when you have a child with CMV, but sometimes it's hard to know what to do. National CMV can help you learn more - about CMV, about the special needs each child might face, and about what your family member or friend might need most right now.

Tech exec/CMV dad discusses raising CMV awareness online

Silicon Valley executive Wade Chambers has not only sat on the board of directors of both the National CMV Foundation and Stop CMV, but he also has twin daughters born with congenital CMV. Wade's professional past in tech has seen stints at Netscape, AOL, Opsware, and Yahoo, but his current role is serving as a Vice President of Engineering for Twitter. We sat down with Wade to get his insights into how the issue of CMV can leverage exising and emerging technologies to raise awareness and encourage advocacy. 

Remembering Aedan

The tremendous loss that we experience -- as parents and as a community -- when a child sucumbs to the effects of congenital CMV cannot by overstated. We see ourselves in each parent's experience and we extend our love and hope to all children born with CMV, much like we would our own. 

How has congenital CMV impacted your life?

Author: Parent Perspective National CMV is helping to produce a display that will communicate the impact of congenital CMV, not just on children, but on their parents and families. We realize that countless families struggle to cope with a congenital CMV diagnosis in their child and will also, unfortunately, experience additional stress and difficulty both inside and outside of the family home. We would like to capture these thoughts and insights from those parents and family members who are willing to participate and to display them anonymously to help educate the public and professionals about the true impact of congenital CMV within the family and home.