Megan’s Story (RSV)

Grace completes our family—she makes us laugh, keeps us on our toes, and helps us keep perspective. Unfortunately, Grace is also very susceptible to illness because she was born with cytomegalovirus (CMV), an infection that weakens her immune system. She also has cerebral palsy, is deaf, non-verbal, and has processing issues. We are always on the watch for anything that could cause serious complications and are as vigilant as we can be about keeping Grace away from harm.

But, sadly, RSV hit her hard when she was 2 years old, likely contracted while at daycare. She was lethargic, had trouble breathing, and had high fevers. For nearly two weeks, she was not herself. It became so concerning that we went to the pediatrician where she tested positive for RSV. The day after she tested positive for RSV, she had her first seizure. It was grand mal and very scary. The seizure lasted for 15 minutes, and Grace started showing signs of respiratory distress—turning blue in the face. Paramedics arrived and gave her rescue medicine then rushed her to the hospital for further care. The doctors believe that RSV stressed out her body so badly it caused her to have a seizure, triggering the beginning of what has been a continued seizure journey for Grace.

Since then, she has had two more seizures and will continue to have them for the foreseeable future. While she has broader medical challenges, because of how susceptible she is to illnesses, we are always on high alert with the flu, COVID-19, and other viruses, as we have seen firsthand the complications that can occur.

Other parents need to know about RSV because arming yourself with information is important to protecting the health of your child. Many times, parents are uninformed, and it is not until your child becomes sick that you realize how devastating the effects can be of illnesses like RSV. Educate yourself on preventative measures to help keep your family safe.

Megan, a patient advocate, lives in New Hampshire with her husband and two children, Grace and Finn.