Preemie Parent Mentor, Amy A., shares the story of her preemie’s experience with RSV.
Once we left the NICU with Justin, our 23 week micro preemie, we knew we weren’t “out of the woods” but we were so grateful to have made it out. There were definitely countless times during our three and a half month NICU stay when we were not sure whether we would be taking Justin home. We were discharged with countless instructions and referrals to specialists. In preparation for his discharge, Justin received his first injection of Synagis – an injection of antibodies given monthly to protect high risk infants from severe RSV disease during the RSV season. It is like a vaccine but technically it is not a vaccine. We were instructed to follow up with a pulmonologist who would administer the rest of the injections that our insurance would cover. Considering Justin was born at 23 weeks and the severity of his lung disease, we were covered for five more months of synagis shots. Justin was discharged in August so we received synagis injections for the Fall months and most of the Winter months when RSV season is at its peak.
Thankfully, Justin remained healthy with only a couple of very minor colds until he was about 21 months old, long past when he was no longer receiving his synagis injections.
When Justin was 21 months old, he got a cold that initially appeared as just a run of the mill cold with a cough. However, it escalated and became more severe rather quickly. It went down to his lungs and for the first time he was put on nebulizer treatments to help him breathe. I gave him the nebulizer treatments several times a day for a few days and he didn’t seem to be getting any better. We were in constant contact with the pediatrician who was monitoring him closely. He just couldn’t seem to get better and finally we ended up taking him to the ER as he was beginning to have severe respiratory distress.
Justin is so tough – I assume from his time in the NICU and all he endured. As a result, I’ve learned that his behavior is not always indicative of how sick he really is. He was playing and eating strawberries the morning we took him to the hospital but when I saw how he was breathing and the color of his lips, I knew he need to be taken right away.
I’ll never forget the ride to the hospital. He was declining before our eyes. We were immediately rushed in upon arriving and he was given oxygen as his oxygen levels were dangerously low. They did blood work and a chest X-ray. I remember when the doctor came into the room to report the chest X-ray results. She explained that he had severe pneumonia. I asked her, rather naively I realize now, “how did this happen?” She looked at me and said it is clear from Justin’s X-ray that he has residual chronic changes to his lungs as a result of his premature birth that make his lungs particularly more susceptible to infection.
At that time, it had been 21 months since we were discharged from the NICU. We had tried so hard to put the trauma behind us. We had been discharged from most of our specialists and life was getting back to normal. We even got pregnant during that time and Justin had a six week old baby brother. Nevertheless, I was shocked that his lungs were still significantly impacted by his premature birth. I’m pretty sure I tried to convince myself that he was all better now but the doctor’s words to me told me the opposite and it was a rude awakening.
Shortly after we received his blood results, we were told he had RSV (respiratory syncytial virus). This is what we were afraid of and what we spent months trying to prevent. Justin was so sick he had to be admitted to the PICU (pediatric intensive care unit). He could not breathe without oxygen. The trauma of the NICU came flooding back to me like an old nightmare I tried so hard to forget. Justin spent four days in the PICU and then was well enough to be transferred to a regular room.
We ended up spending 10 days in the hospital.
At the time, my younger son, Ari, was only six weeks old. A couple days after Justin was admitted, Ari came down with a cold and a cough. We feared he had contracted RSV from Justin and our fear was confirmed. Because Ari was so young, only 6 weeks old, he also had to be admitted to the hospital at the same time. What was so painfully obvious was just how sick Justin got from the RSV virus compared to Ari who was born full term. Had Ari not been so young, he would not have been admitted to the hospital as his symptoms were pretty much just a bad cough. Justin, on the other hand, was a whole different story – severe respiratory distress, pneumonia, oxygen, etc.
Those 10 days in the hospital with my two children were very challenging – to say the least. To a certain extent, it was surreal. I thought we were out of the woods with Justin. I forgot, conveniently enough, that Justin’s lungs would take years and years to heal from how sick he was the first few months of life. It hit me like a ton of bricks. It brought back to my attention how severe the RSV virus can be for preemies. It made me think to myself, “Wow! Had his synagis injections not been discontinued, would he have gotten RSV?”
The insurance companies have very strict qualifications for the synagis injections. It is an expensive medication. However, the amount of money my insurance company had to pay for a 10 day hospital stay far exceeded the cost it would have been to continue the injections. Be that as it may, it reminded me just how fragile Justin’s lungs still were.
Today Justin is five years old and doing well. He still gets pneumonia way too often but thankfully nothing close to that experience. I learn more and more each time he gets sick about how to handle him and to stay on top of it with his inhalers and medications. RSV is a very serious virus that can be simply a cold and a cough for a full term child and be deadly for a preemie. Hopefully, preemies can continue to receive synagis shots for longer periods of time to protect them from this virus. In the meantime, we as parents can continue with simple things such as hand washing and avoiding places where there are sick children if possible.
We feel very blessed that Justin fully recovered from RSV but we know that is not the case for everyone.
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