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Revisiting the Really Scary Virus (RSV): What I’ve learned and what I wish I would have known

It’s been two years since our family was forever changed by Respiratory Syncial Virus (RSV). Two years since I spent 5 days at Nationwide Children’s Hospital clutching to a little boy who was fighting for his life. Two years since I went through every single emotion a mother could possibly experience: anger, guilt, fear, confusion, desperation. Two years since I vowed to myself, and my child that I would do everything in my power to prevent other families from experiencing what we did.

Let’s travel back to December 2016 when our youngest son, Adam, was only six weeks old. (The asterisks I place throughout this article symbolize annotations that I will later explain.)

Like many families, Adam had older siblings who were in preschool. My oldest son, Luke was 3-years old when he came home around Thanksgiving with a nasty cough. He ran a low grade fever, and when I took him to the pediatrician’s office I was told he had a virus and it would pass.

Well, it did pass… down to his younger sister Eden (2-years old). It hit Eden a little harder than Luke. She ran a fever for several days and had vomiting with her congestion. I remember specifically asking about Adam at the pediatrician’s office and I was told to keep breastfeeding him and isolate him as much as possible*1.

Now, I want to put this into perspective for people who are not parents or perhaps have been far from the toddler/baby age. I have a newborn baby and a 3 and a 2-year old who are very sick and want nothing but their mommy. I am sleep deprived and worn to the core from cleaning blowouts, vomit, phlegm. I’m also trying to not to adjust to the new family dynamics of three children. I’m not making excuses, simply trying to paint the picture of a mother trying to survive. I did everything in my power to protect Adam, I need to constantly remind myself of that, because 2-years later… I still feel the guilt.

Adam was diagnosed with RSV at 6 weeks old. He tested positive at the doctor’s office. “Mrs. Ireland, your son has RSV, take him home and watch him.”*2 I stared at the tech, I had never heard of RSV before.

After a long 24 hours at home, Adam wasn’t improving so I rushed him to Nationwide Children’s Hospital where we spent 5 terrifying days. I watched my baby fight for his life and felt every single emotion imaginable*3.

Fast forward to today, Adam fully recovered and is a perfectly happy and healthy 2-year old child. He’s full of life and personality. But that’s not the reason why I’m here today. I’m revisiting this scary time of our lives to share what I wish I would have known and what I’ve since learned about RSV.

What I wish I would have known:

  1. *Isolate him as much as possible: When I was at the pediatrician’s office with my older two children, I wish they would have offered more information about possible viruses (like RSV) that could pose a real danger to Adam during that period of time.
  2. * Take him home and watch him: When Adam tested positive for RSV, I was told to go home and watch him. At the time, I had no idea what I was supposed to be watching. There was no explanation. They didn’t show me examples of labored, belly breathing or what a child in distress looks like. There were no visuals, and no real examples provided. I wish I would have known what to watch for. I wish I would have known a trip to the hospital was more than likely in our future. I wish I would have known it wouldn’t be a quick trip to the hospital. I wish I would have known that RSV spikes by day 5-7. I wish I would have known the cough would linger for several weeks, perhaps months. I realize this is not the case for every RSV parent, but my reality was filled with lots of holes.
  3. * Feeling every emotion imaginable: I felt a tremendous amount of fear, anxiety, desperation and guilt with Adam’s diagnosis. How did we go from having a slight cough to being hooked up to machines and oxygen and fighting for our lives in a matter of hours? How did my baby almost lose his life to a virus I had never even heard or before? There was also a small sense of relief when we finally checked into the hospital. Relief that my child was finally going to get the professional help he desperately needed. I tried to go online and look for resources, support groups, ANYTHING…but there was nothing. That’s part of the reason why I’m here today.

What I’ve learned about RSV 2 years later:

  • Since our bout with the Really Scary Virus, I’ve connected with so many wonderful people in the medical community. My journey began with the researchers at Nationwide Children’s Hospital, where Adam spent 5 days. The Research Institute at Nationwide Children’s Hospital are working to help develop a vaccine to prevent RSV infections. The team’s research is so promising they have received a $6.75 million grant from The National Institutes of Health. If successful, the vaccine will save the lives of infants and children throughout the world, preventing more than 57,000 hospitalizations and over 2 million medical visits for infants and children each year. There are many other medical institutes, like the research team at The Ohio State University and The University of South Florida that is also working hard to develop an RSV vaccine.
  • I’ve spent some time in Washington, DC connecting with some incredible people at The National Coalition for Infant Health. We are working together to form a sub-coalition for RSV parents. I’m hoping more parents will join our fight to raise awareness for this virus. We can’t do it alone, and if our coalition gets enough traction, we hope to speak with legislators to gain support for this cause. Super exciting!!
  • I’ve connected with a pharmaceutical company that is VERY close to having an RSV vaccine on the market later this year. The vaccine would be administered to pregnant mothers during their 30th week of pregnancy, and the hope is the antibodies would be passed along to the baby through the placenta protecting the child for the first 6 months of life from RSV. This is the most vulnerable time frame, so this could be a huge win. YAY!
  • Currently, the only preventative measure on the market is an FDA-approved prescription, made up of virus-fighting antibodies called Synagis. My child did not receive Synagis, as he was born full-term but I have heard from other RSV parents you have to qualify and the prescription is very expensive. Synagis is not a vaccine, but rather a booster to help protect high-risk infants.
  • RSV can strike anyone! RSV is not a prejudicial virus and it has a potentially deadly effect on anyone despite education, demographics, region, religion, socioeconomic class. In fact, RSV is the #1 cause of hospitalizations for children under the age of 2 in the United States. It is the 2nd leading cause of death for infants worldwide, behind malaria. RSV is real. I am not offering these facts to scare you, I am offering them so you are aware and understand how quickly the virus can manifest in your community.
  • You are NOT alone! I receive messages weekly from RSV parents sharing their stories, their frustrations, their fears. It’s a scary virus that no one should have to experience alone. My hope for the coalition is we can create a solid resource for parents to find answers and support. In the meantime, I am not a medical professional but I am here for moral support and I can help answer any questions you may have. You can always send me a DM on Instagram @shanistyireland or send an email to hello@shesbecomingdomestic.com.

Because no one should have to endure this Really Scary Virus, alone.

Adam at 6 weeks old with RSV.

My original blog post can be viewed here: https://shesbecomingdomestic.com/2017/01/17/rsv-changed-the-way-i-parent/

Other places you can learn about our story:

Today Show, Scary Mommy, Motherly, CBS News, US News and World Report.

Podcasts and other videos:

Alliance for Patient Access 

National Coalition for Infant Health Summit

2 Comments

  1. Lisa
    February 6, 2019 / 3:34 pm

    One random thought for any parents of high-risk kids with underlying conditions, especially kids under age two with pulmonary or CHD’s – there is a medication that can help prevent RSV called Synagis. It is NOT a vaccine; it’s apparently incredibly expensive, so getting insurance approval here in the U.S. can be a bit of an uphill battle. My daughter was hospitalized due to RSV in 2017, and also last week. I didn’t try for Synagis this year because of her age, but you can bet I will be next year!

    • Shanisty
      Author
      February 7, 2019 / 7:11 am

      Thank you so much for the note Lisa! I know there is a lot of confusion about Synagis with RSV parents thinking it is a vaccine. I’m glad you pointed out that it is not one! The pharmaceutical company I’ve been meeting with would be the first ever to put a vaccine on the market…. which is super exciting! I hope you qualify for Synagis next year… with her history, I really think you will!

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