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

Dear Adam,

You turned 2 years old this month, and in typical 3rd child fashion… my birthday letter to you is coming a few weeks late, but that doesn’t reflect my heart.

Adam, you are saving lives. You have impacted more people in your two short years on earth than most people have in a lifetime. You don’t even realize it yet, but one day you will. I hope you are grateful for the work we’re doing.

Adam, we almost lost you during your sixth week with us. You tested positive with Respiratory Syncytial Virus (RSV) — a virus none of us had ever heard of before. But you were a fighter and survived with flying colors. I know this is your story to tell, but Adam your mom and dad are so passionate about helping others any way we can so we’ve made it our mission to share our family’s story… your story, in hopes of saving others.

Adam, you are the sweetest. You have the calmest and gentlest disposition. You are perfectly content sitting on our laps and observing the room around you. You are so cuddly, in fact, you can’t fall asleep without touching someone. You are constantly giving us hugs and kisses and we love you for that.

Adam, you adore your sister and look up to your brother. You want to do everything they do. You play sports and board games with Luke and you are patient enough to play “house” with Eden. She calls you her “puppy” and you crawl around on the floor with your tongue hanging out. She loves you more than you love her at this age. She wants to cuddle you and smother you with kisses… you don’t always allow her.

Adam, you look so much like your daddy with your big brown eyes. You also have his temperament, which I’m thankful for.

Your current loves are Sesame Street, Mickey Mouse, balls, cars and trucks. You also are obsessed with the Baby Shark song. Doo doo doo doo doooooo. Your love for Baby Shark has evolved to all sea creatures. When we go to the zoo, the aquarium is your favorite part…you could spend hours observing fish.

Your little personality is really starting to shine. We can’t wait to see what this next year brings you!

Adam, when I found out I was pregnant with you I prayed for a boy. I really wanted Luke to have a baby brother. You have filled our lives with so much joy, love and laughter. We couldn’t imagine our lives without you.

Thank you for being such an inspiration. Thank you for not giving up in the hospital when it would have been so easy to stop breathing. I thank God everyday for you and for the healthy air in your lungs.

Happy 2nd birthday, Adam.

Love,

Mommy

 

Happy 2nd Birthday, Adam!

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It’s always such an honor to be recognized by any publication for our family’s efforts to raise awareness around Respiratory Syncytial Virus (RSV). But to be featured by Scary Mommy is kind of like the Chip and Joanna Gaines of mom publications.

I was interviewed by one of Scary Mommy’s staff writers a couple of weeks ago and then our story was published last week while we were on vacation. We are in the height of RSV season, and Adam is actually sick with a respiratory virus as I type this. It’s so pitiful. But to know his story is helping others warms my heart.

I’ve had about a half-dozen moms reach out to me during the last couple of weeks about their child’s recent diagnosis with RSV. They would not have known what to look for if it wasn’t for Adam’s story!!!! I tear up every time I think about the lives our son is saving.

So thank you, thank you, thank YOU from the bottom of my heart for listening to our words and sharing our story.

Here is Scary Mommy’s recent publication:

https://www.scarymommy.com/espiratory-syncytial-virus-rsv/PicMonkey-Image7

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 haven’t blogged in a bit, and I’m sorry for that. School started a few weeks ago for both my older children. With school started soccer, ballet, tap and a boatload of new germs.

Last week, we spent two days at Nationwide Children’s Hospital with my oldest son who contracted a scary Respiratory Virus. If you’re a parent, you probably hate the word “virus” as much as I do. You already understand when a doctor utters the first syllable it means there really isn’t an easy treatment for your child. Luckily, and unluckily that wasn’t the case for Luke last week.

Our family went to our local swimming pool along with every other family in the entire city on Labor Day. That evening we went to my parent’s house for a cookout and Luke played golf with his dad…. all was perfectly fine!

Around 4 AM, Luke came to my room complaining he couldn’t breathe and he felt like he was going to throw up. I took him to the bathroom, he seemed fine, so I went back to bed with him. I didn’t notice labored breathing then… it was 4 AM, dark and we were both groggy.

The next day Luke spent his time on the couch watching movies and napping, which is very unlike him. I noticed his breathing was fast and labored, so I called his doctor. The after-hours clinic asked us to come into a children’s urgent care where his breathing was monitored. The physician there advised us to rush him to Nationwide Children’s Hospital… or he was going to call a squad. I’m awake now!

After a very long and quite uncomfortable wait in the ER waiting room, we were finally seen by doctors around 2:30 AM. He was immediately hooked up to an IV, injected with steroids and the breathing treatments began. Doctors decided to move him to a room and admit him after his breathing wasn’t slowing down and his heart rate was through the roof. It was pretty frightening, if I’m being completely honest.

Luke underwent several breathing treatments, every 2 hours and then every 4 hours the entire next day. The doctors were sure he would need to stay another night, but Luke started to improve rapidly and was reacting great to the treatments so we were able to go home the next evening. Armed with medicine and breathing treatments.

A week later, Luke is completely back to normal. He has been in school all week, had swimming last night and a soccer game this weekend. Back to normal for us all, and keeping our fingers crossed we can skip out on a couple of rounds of sickness in our near future.

Here are some things I learned:

  • A child’s breathing should be anywhere between 20-30 breaths per minute to be considered normal. Luke was at 72 breaths per minute.
  • Follow your mama gut. I should have taken him to the doctor much earlier in the day to avoid urgent-care and perhaps crazy long waits in the ER, but I didn’t. I should have listened to my mama gut much earlier.
  • Respiratory season is starting early this year. The doctors at the hospital told me when school started, the school bus basically dropped off busloads of children to the hospital for respiratory viruses.
  • WASH YOUR HANDS! I make my children wash their hands first thing when they get home or get in the car from school. Even if it’s using anti-bacterial soap as we drive down the road.
  • If your child is sick, please keep them at home. I completely understand this is super easy for a stay at home mom (or work from home mom) to say, but some children (like my boys) are very prone to contracting respiratory viruses and it’s dangerous for them. I know there are millions of other children like mine, and children who even fair even worse than a couple of nights at the hospital.

*special thanks for the wonderful team of doctors at Nationwide Children’s Hospital for taking care of our Luke.*

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