CMV Spotlight: Paul and Pippa
Spotlight on CMV
Welcome to Sunshine and Shattered Dreams! I am so glad to have you here to share your beautiful journey.
My world for the last few years has been advocating, shouting about CMV from the rooftops. The only story I have been sharing, however, is mine, which is not the only one out there. There are (unfortunately) many other families who have gone before us and will come after.
This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents who advocate alongside them. This is just 1 of them...
Samantha: Please introduce yourself and your child. Tell us a little about your family:
Paul: Hi, I’m Paul Devereaux. My wife (Amanda) and I have a 4 year old daughter (Pippa) who was born with congenital CMV. We live in Ankeny, IA (a suburb of Des Moines).
Samantha: Before Pippa's diagnosis, had you ever heard of CMV, how much did you know?
Paul: No, I had never heard of it. I knew nothing.
Samantha: How did your journey begin? What was going through your mind?
Paul: Our journey with CMV began at my wife’s 20-week ultrasound appointment. The doctor noticed that Pippa’s brain was measuring small, so he recommended an amniocentesis test to see what was going on. The results of that showed CMV. This was an extremely difficult time for our family to deal with the uncertainty and lack of information available to us about CMV. We did our own research and got in touch with Dr. Mark Schleiss at the University of Minnesota who was amazing and helped us understand our options (which included 4 cytogam infusions for my wife to hopefully prevent further damage from the virus). In some ways we were lucky to have discovered the virus so early, and we will forever feel like these infusions improved Pippa’s outcomes.
Samantha: Tell me a little more about Pippa's conditions associated with CMV. For her age, how is she developmentally?
Paul: Pippa is 4 years old. In many ways she is like a 1 year old. She has a brain malformation called polymicrogyria. This causes global developmental delays, as well as
seizures. Pippa does not talk, and is beginning to attempt using a “talker” device. She began walking at 2.5 years. She has a feeding tube because she is easily dehydrated, especially when she is sick. She takes a bottle three times per day and eats pureed food twice per day.
Samantha: What has been the hardest moment for you as a father?
Paul: The hardest times for me are when Pippa gets frustrated with her inability to communicate with us. She is working very hard at speech therapy to learn how to use her communication device, but it has been very difficult to watch her deal with this frustration and not be able to help her.
Samantha: What is your greatest hope for her life?
Paul: My greatest hope for Pippa is that she learns to share her thoughts/wants in some fashion, even if it’s on a very basic level. I want to know what she’s thinking!
Samantha: This journey through special needs parenting can feel extremely lonely, even when we know we aren’t alone. There is often no physical closeness to another parent going through something similar. Where do you turn to fill your cup? How do you take care of yourself?
Paul: My wife and I have turned to a faith-based family counselor who has really helped us navigate our feelings on being special-needs parents. This has been a huge
help and I highly recommend this for any other CMV parents out there.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother or father who has just begun?
Paul: I would just say that the strength of your marriage is going to become more important than ever. Find a way to set aside time to focus on your partner even when it’s really difficult.
Thank you for sharing, Paul. As 1 of 2 dads who interviewed, it's a great perspective. We often think of how mothers are affected and the mental and emotional loads that they bare, and we look over the impact that having a child with special needs has on Dad.
There is power in hearing your story, I hope that father's all over find hope in this.