Volunteer Spotlight: Shayne Gaffney

Volunteer Spotlight: Shayne Gaffney

Tell us about your professional/educational background.
My professional background is all over the place, but I started off working full-time at 18 as an assistant dairy manager in a grocery store while going to school at night. From there, I became a licensed physical therapy assistant in Massachusetts. I worked in various settings but favored outpatient and orthopedic. For the last couple of years, though, I have been self-employed as a cycling coach and running my business, GC Coaching. I hold an associate’s degree in physical therapy, a bachelor’s degree in health science, and many coaching, performance, and nutrition certifications.

What makes the National CMV Foundation's mission powerful for you?
The mission of the Foundation is to educate women of childbearing age about CMV. This mission is powerful because my wife and I had zero knowledge of CMV and were never told about it during our prenatal appointments before our daughter Grace was born.

Grace was born severely affected by CMV, and we had to quickly educate ourselves about it, comprehend what was happening, and come up with a plan of action in the NICU when my wife and I couldn’t have been any more fragile.

Let me paint a picture, and bear with me here, of the early days of CMV. Imagine for a moment being told you were having a healthy and happy baby girl, and three days later, finding out she had irreparable brain damage, is profoundly deaf, may have vision issues, and will never walk. Oh yeah, you also need to give her a known carcinogen by mouth for the next six months, which hopefully won’t do more harm than good. While at the same time, making sure your wife is recovering from her emergency C-section and not blaming herself for what happened.

Each day you visit the NICU, you are told more bad news from more new faces, and you just stare at the monitor, hoping not to hear another alarm, while trying to ignore the weeping coming from the other parents. You can only hold her for a limited amount of time before she is placed back into her incubator. She is so bruised from the number of injection sites and closed veins, and this is after two complete transfusions, which she thankfully survived. You walk by other patient rooms with their new babies and see flowers, balloons, visitors, hear laughter and joy, and just ask yourself, “why?”.

You leave every day for weeks without your new baby and cry the entire way home. You call every night before bed to see how she’s doing and to make sure she’s still breathing, and you’re lucky to get 1 hour of sleep each night. We were fortunate to bring Grace home in a few weeks, but many other parents don’t have that luxury and say goodbye in the hospital.
 Mom and Dad, having not slept in 3 weeks, with baby Grace finally ready to go home!
Grace has had to overcome so many challenges, and in 2020 alone, she had two surgeries, 54 medical appointments, and 260 therapy appointments!

I feel if somebody educated us about CMV, things would have turned out very differently. For this reason, I have dedicated a portion of my life to the Foundation’s mission.

What made you decide to get more involved with the National CMV Foundation as a Community Alliance Chair?
See above! There are still babies being born with and dying from CMV. I have never been the one to sit back and let others decide for me. If you want to see change, action needs to occur.

In your role as CMV Community Alliance Chair*, what goals have you set for 2020?
My primary goal for 2021 is to have the universal CMV screening and mandatory prenatal education bill passed in Massachusetts. I will also continue to lead parent initiatives, host fundraising events, and continue my awareness campaigns through new media.
What does success look like to you?
Success, to me, looks like no babies being born with CMV.

What motivates you?
I find motivation from my daughter Grace, my son Finn, and my wife, Meg. We have been through a lot together in these past couple of years, and this could have torn us apart just as easily. I am thankful this has brought us even closer together, though. It’s not hard to find motivation when there is so much good to come!

As a volunteer leader, what advice do you have for people who want to work on CMV advocacy but don’t know where to start?
Move your thumb! Let me explain, ha. The easiest place to start working on CMV advocacy is social media. If you can move your thumb twice, you can share a post! So, move your thumb!
Favorite quote?
For this context, “Comparison is the thief of joy.” and “If you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

What do you like most about living in New Hampshire?
I am a Massachusetts ex-pat living in New Hampshire currently. I like the open spaces, quiet solitude, and my neighbors most about living here now.

You're happiest when?
During our daily post-dinner, pre-bedtime, kitchen dance parties! Grace likes being bounced to the EDM beat as her brother jumps like a mad man on his miniature trampoline. πŸŽ΅πŸ•ΊπŸ’ƒπŸŽ΅