October is national Respiratory Syncytial Virus awareness month. Most commonly known as RSV, this virus commonly affects children ages five and younger. What presents as a common cold for older children and adults can have lifelong effects for younger children and can even become deadly. For my family, hearing “RSV” triggers PTSD of epic proportions. At 13-months-old, our daughter Violet was hospitalized with RSV. The story is long, emotional, and inspiring. Our journey involved several doctors, nurses, and respiratory therapists in two states. Here is a brief overview of our story:
January 2017: Violet was hospitalized with RSV. She was immediately admitted to the PICU and had to be intubated and placed on a ventilator within 18 hours. She would remain intubated for 12 days.
February 2017: Violet goes home!
March 2017: Violet was readmitted to the PICU with difficulty breathing and had to be re-intubated. The intubation from her first illness caused severe scarring in her airway resulting in her breathing through a hole the size of a pinhead.
April – May 2017: Several attempts were made to clear the scar tissue from Violet’s airway. She had these procedures every 2-3 weeks.
May 15, 2017: Violet went in for a routine procedure, and they could not clear her airway, so she received a tracheostomy.
July 2017: A stent was placed in Violet’s airway to try to “train” it to stay open. The doctor wanted us to have overnight nursing since she would only be breathing through her trach. Due to the lack of qualified home health pediatric nurses at the time, we ended up staying in the hospital for five weeks until they removed her stent.
September 2017: Violet had a follow-up scope to see if the stent was successful. Unfortunately, the stent was not successful, so we were tasked with exploring other options.
November 2017: Our first trip to Cincinnati Children’s Hospital to meet with the top ENT surgeon in the country.
February 2018: Violet is hospitalized with RSV again for the second year in a row. Support and recovery were easier due to her already having a tracheostomy, so this time we only stayed for two weeks.
March-June 2018: We took several trips back to Cincinnati for procedures to prepare Violet to be a candidate for airway reconstruction surgery.
July 2018: Violet had airway reconstruction surgery.
August-December 2018: Several trips were made back to Cincinnati to monitor the progress of her airway reconstruction.
January 2019: Surgery was determined successful, and Violet was able to have her trach removed.
April 2019: Violet was cleared to return to all normal 3-year-old activities including swimming and returning to a daycare environment.
Presently, Violet is thriving at preschool. She will be turning five in December, and she will be attending kindergarten at the local public school in the fall of 2021. Our wish is that no family would ever have to go through what we went through and that no child goes through what Violet went through. Is this realistic? Probably not, but we can definitely help reduce the chances of contracting this horrible virus.
According to the CDC, there are several ways to protect against RSV:
- Wash your hands often.
- Keep your hands off your face.
- Avoid close contact with sick people.
- Cover your coughs and sneezes.
- Clean and disinfect surfaces.
- Stay home when you are sick.
In addition to the CDC recommendations, I have added my own recommendations to the list:
- Don’t kiss the babies! Just don’t. Unless you are their parent, don’t kiss them on the face or mouth.
- Stop shaming moms for not allowing visitors during cold/flu/COVID season. You might not like it that you can’t visit. It might hurt your feelings, but if you never have to see a family go through what we went through in your lifetime, it will be too soon.
- Always be kind. Taking the severity of our situation out of the equation, RSV, in general, is exhausting for kids and parents. Family, bosses, coworkers, please be understanding. Sleep is almost non-existent until the day five peak of RSV.
Moms and dads: we have to take care of each other. The overwhelming kindness and support that my family was shown during some of our most difficult days is an inspiration to me every day. I enjoy paying it back, paying it forward, and just reaching out to parents who are going through the same things we went through. The hardest thing I had to learn to do is ask for help, accept help, and accept that kindness can come in all forms and sometimes even from perfect strangers.