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

Last week I embarked on a new journey, and perhaps one of the most important ones of my life. I was asked to fly to Washington, DC to meet with a pharmaceutical company that’s working hard on developing a vaccine for Respiratory Syncytial Virus (RSV). I agreed, because sharing our story is something I am extremely passionate about.

If you’re new to my blog, allow me to give you a summary. When our youngest child, Adam, was just 6 weeks old he was diagnosed with RSV and almost lost his life. He had contracted the virus from my older two children who probably picked it up from preschool. We spent 5 days in the hospital, as Adam was hooked up to breathing machines and IVs. It was the scariest days of my life. If it wasn’t for the incredible care at Nationwide Children’s Hospital in Columbus, Ohio Adam would not be celebrating his 2nd birthday with us this year.

So last week, I had the incredible opportunity to meet with some intelligent, talented individuals who explained their efforts in creating the first RSV vaccination. It was fascinating and truly enlightening to listen to them speak about the virus and how it has evolved. There have been so many failed efforts over the last 50 years in creating a vaccine that would protect infants from the second leading killer worldwide, behind malaria. The amount of the time, effort, money and passion that’s gone into making the RSV vaccine is beyond comprehension.

Friday morning, I stood in front of a room of about 300 people from the pharmaceutical company. Many were doctors, scientists and researchers – all were working together on this vaccine. I stood in that room and opened up my heart. I opened up about our story, Adam’s story, in hopes that he serves as an inspiration. I let them view the short 15 second video of his extreme labored breathing. Every single time I watch it, I tear up, as many others did in that room.

While it was an emotional morning, it was so inspiring for me. You see, this is only the beginning. I’m making it my mission to continue the conversation. To further the awareness and the education. I look forward to watching this particular company make headway as the final clinical trial results come in. There is still such a long road ahead for the company, but they are on a fast track for sure.

My closing message for the amazing people I met with was simple. I know how hard it is when you’re in the trenches. When you’re working on something every single day, it becomes mundane, you almost become numb to it. Millions of dollars have been poured into this work and many people feel as though they have given their lives to the RSV vaccine.

As I stood in front of that room, I wiped my tears away, thanked them and said: this IS absolutely something worth giving their lives for.

#ProtectLittleLungs

You can read our full RSV story here: How RSV Changed the Way I Parent

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Adam at 6 weeks old with RSV.

 

 

I had no idea what RSV (Respiratory Syncytial Virus) was. I am not a medical professional. I am an average mom with three kids.

Like most kids, mine get the sniffles and sneezes during cold and flu season. They are up to date on their vaccinations, and interact with other children on a semi-regular basis. Play dates, playgrounds, the grocery store. I’ve never kept my children in a bubble.

We had our third child in November. Adam was healthy and weighed a whopping 9 lbs. 8 oz. Right before Thanksgiving, my older son started to show signs of a nasty cough. He never ran a fever, and after about a week the virus had run its course. Like most families with multiple children, the virus was passed down to my 2 year old daughter.

It hit her much harder. She ran a high grade fever for 4 days and nights. The nasty cough was causing her to vomit. She wasn’t eating and was extremely lethargic. Between my two older kids, I had been to their pediatrician 7 times in 2 weeks. Finally, my daughter was prescribed an antibiotic for her ear infection, and she started to show signs of life again.

I was extremely naive when it came to my newborn. I seriously thought since I was breastfeeding him he would have extra immunities against this nasty virus my older two were passing back and forth. I was stupid. And I regret it.

I was over at my parents’ house one Saturday evening and my dad was holding Adam when he called me into the living room. “Adam is really sick.” I kind of laughed it off, in a complete sleep deprived stupor. I didn’t want to believe him, because I didn’t think I could handle one more sick child.

That evening Adam took a turn for the worse. He was coughing a phlegmy cough. The next few days were kind of a blur. Adam was taken back to the pediatrician twice, the second time his nose was swabbed and he tested positive for RSV and bronchiolitis.

“What is RSV?” I asked a tech. She couldn’t tell me. Just said to watch him closely. I should have pressed the pediatrician’s office more, but I kind of felt dumb. I was now on my 9th visit in two weeks. So I left.

That Wednesday night Adam started running a low grade fever. What I DIDN’T know was even a low grade fever is dangerous for a newborn. Stupid, like I said. He was vomiting after every feed. The next morning he had gone a full 12 hours without a wet diaper. I called back to the doctor’s office. Instead of setting up my 10th appointment, they told me to take him to Nationwide Children’s Hospital immediately.

Adam spent 4 days and 3 nights hooked up to oxygen, IVs, fluids, antibiotics. He had multiple tests, chest X-rays, breathing treatments, nose aspirations. His care and treatment at Nationwide Children’s was FIRST CLASS! I can’t rave enough about the hospital and staff. While I loved the hospital, I never want to have to go back again.

In the past few days I’ve seen multiple articles about RSV pop up on my news feed. The reason I’m sharing our story is because I want other parents to know WHAT I DIDN’T KNOW. 

  • Watch their breathing. Take your child’s shirt off and see if you can see their ribcage when they are trying to breathe. There is a tiny V shape under your child’s neck. When they suck in if that V is exposed, they are working too hard to breathe. Lastly, does their head bob when they breathe? If so, they are working too hard. Adam was doing all 3 of these for a few days.
  • RSV peaks on days 3-5. I didn’t take him in to Children’s until day 5. Unfortunately, it’s a virus that causes patients to get worse before they get better.
  • RSV is common. Like super common. The average adult will get RSV multiple times in their lifetime. It’s just a cough with a common cold. For Luke, it was just a cough…for Eden, it was a fever, cough and vomiting…for Adam it was 4 days at Children’s Hospital.
  • The RSV cough will last 4-6 weeks. My kids are FINALLY free of that nasty cough, but my husband and my mom are still coughing. This virus affected our entire family before Thanksgiving. It’s now mid-January!
  • For medical professionals to consider it “RSV Season” they must see 5% of patients test positive for RSV. So far this winter, they’ve seen 49% of patients test positive. I’m not sure if medical professionals or the CDC will call that an epidemic, but they should.
  • Hand washing is great, but isolation is best. If you have kids and plan on coming in contact with a newborn…just stay away! Children are carriers of this virus, and while it may be a slight cough for a 5 year old, it could be deadly for a 5 day or 5 week old.
  • Rain brings RSV. While there is no scientific evidence of this, researchers at Nationwide Children’s Hospital tell me when the weather warms up and the rain sweeps through, RSV is on the rise.

People may think I’m crazy, but I’ve cancelled playdates and seek out a babysitter if anyone shows a sign of a sniffle. Our family cancelled two vacations because of this virus.

Since our run with RSV, Adam is now part of a case study at Nationwide Children’s Hospital. Medical researchers are working on a vaccine for RSV. There currently is one for preemies, but this vaccine would be readily available to all newborns. I am hoping Adam is able to help save future babies from contracting this horrible virus. And I’m hoping our story sheds some light on a virus I previously knew nothing about.

**Disclaimer: I am not a medical professional. I am just an average mom who wanted to share her story about how RSV affected our family. If there is anything in this blog post that is inaccurate, please email me at hello@shesbecomingdomestic.com OR leave a comment below!**

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RSV typically peaks on day 5. This photo was taken on Day 6 of the virus.

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One thing I was able to do at the hospital was hold him. I’m a firm believer in the power of touch. I held Adam every single second of the day until it was time for bed. I think I left the room 3 times in 4 days.

When we brought Adam in he had extreme difficulty breathing. Was dehydrated and had a tough time keeping his eyes open.

Doctors and nurses worked around the clock to care for our sick child.

We were able to take Adam home after 4 days in the hospital. He is a happy and healthy little boy, today.