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.
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.
Shayne & Meg Gaffney