We know completing the CMV consultation can feel overwhelming, especially with the report being long and detailed. These FAQs are here to guide you, answer common questions, and help you share your personal experience with confidence. Every story matters and your voice can make a real difference in shaping CMV screening for future babies.
Q. The report is very long and complicated – I don’t feel I have time to read it.
A. That’s completely understandable. It’s absolutely fine to read just the short summary at the beginning. What matters most is your personal experience. Everyone affected by CMV has an important perspective on screening, and it’s crucial that the committee hears directly from families. Medical professionals and CMV Action will submit separate, technical responses — your role is to share your lived experience.
Q. Can my family and friends respond if they feel strongly?
A. Yes. The first question specifically asks how CMV affects you, your family, and your friends, which means others who know your experience are encouraged to respond too. CMV doesn’t just affect the immediate family, and many people are shocked to learn there is no routine screening. Every response helps show the wider impact.
Q. Why does CMV Action want screening?
A. We support many families whose children were diagnosed late, and we see the consequences every day:
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Most babies with CMV have no symptoms at birth, so they are not tested
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If a baby is not diagnosed before 21 days, congenital CMV can only be confirmed by going back to the heel-prick blood spot, often causing delays to diagnosis, monitoring, and support
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If diagnosis happens after 28 days, antiviral treatment may no longer be possible, which can affect hearing outcomes
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Late diagnosis often causes huge worry, uncertainty, and distress for families
Timing of testing is crucial – without screening, babies will be missed.
Q. I responded last time and nothing has changed. What’s the point?
A. We know how frustrating that feels. However, there is now more research and evidence about CMV than there was before, and every response strengthens the case for screening. Change takes persistence. Some other countries are now screening, and continued pressure really does matter.
Q. My baby was diagnosed early and received excellent care, including antivirals. Do I still need to respond?
A. Yes. Your experience is incredibly important. You can show the positive impact of timely testing, early treatment, and monitoring, and explain why these opportunities should be available to all babies, not just a few.
Q. What sort of things have parents said in the past? I’m not sure where to start.
A. Families have simply shared their own stories – how CMV affected their child and family, the emotional and practical impact, and why screening matters to them. There is no “right” way to answer. Your story is enough.
Q. I don’t know the answers to all the questions – can I still take part?
A. Absolutely. This consultation is about family experience, not medical expertise. Share what you know from your own perspective. What CMV has cost you personally, emotionally, practically, and how you feel about screening.
Q. The last question asks about alternatives to screening – how should I answer this?
A. Screening is vital, but if it is not yet introduced, there are other steps that could help. Some trusts now offer targeted CMV testing for babies who do not pass their newborn hearing screen, but this still misses babies who lose hearing later. We also campaign for better education for families, midwives, and doctors. You may have your own ideas — please share them.
Thank You
Thank you for taking the time to read these FAQs and consider your response. Remember, there is no right or wrong answer to any of the questions in the survey. The most important thing is to share your own experience and perspective.
Your story, your challenges, and your thoughts on screening are what the committee needs to hear. By taking part, you are helping ensure no baby with CMV is missed in the future.