Oddly enough, I knew about Respiratory Syncytial Virus (RSV) before having a baby of my own. Friends of mine had had a daughter born full-term and she contracted RSV her first year. She was so sick she was hospitalized and even now, nine years later, she has long-term health and developmental consequences that relate to that illness. And another friend’s full-term baby also had RSV and was hospitalized.
So you can imagine my thoughts in 2003 when I had my daughter Becky at just barely 30 weeks gestation at 2 lbs. 15.5 oz. As she worked through her first day or two day of the “honeymoon” in the Neonatal Intensive Care Unit (NICU), the doctor asked me if I knew anything about RSV. My face paled and my stomach lurched.
Help us make Synagis® available for all preemies, sign our petition. http://bit.ly/RSVPetition
“Yes,” I stammered as I quickly realized that RSV season was just about to start and I had a fragile infant with no immune system. I felt sick to my stomach. How in the world was I going to protect her in the NICU, at home?
The doctor went on to note the stringent requirements of lockdown: keeping Becky away from crowds, from people who smoked and/or were sick. And when we took her to the pediatrician’s and specialists’ offices we should ask for a room right away so that we could keep Becky away from germs. I stared at her in disbelief. The thought of going into a germ-infested pediatric doctor’s office with my fragile infant was terrifying. And quizzing family and friends about their health and smoking habits? Good grief. In my mind I felt defeated from the start because I knew there was no way we could 100% protect our child from this illness, try as we might.
The doctor saw my face and noted, “Now there is also a drug called Synagis® that can help along with the other precautions. This drug would be given to Becky every 30 days for 6 months. It won’t prevent RSV from occurring but it will protect her from the serious complications that can occur if she does get RSV.”
Relief washed over me. Someone had our back. Synagis® had our back. I was beyond grateful for anything that would help protect my daughter and give her a fighting chance in this world.
Well, Becky went home after 38 days in the NICU, complete with oxygen and an apnea monitor, medications and a full team of specialists. She got all six injections of Synagis® that first season, and thankfully, we survived our lockdown unscathed by RSV. It was then that I started to have hope for my daughter and her immunity.
The second season the pediatrician said she would not qualify for another year of Synagis® so we just did the best we could. Becky got a terrible cold that finally cleared up overall but the cough remained. Three stressful months later, the doctor diagnosed Becky with Reactive Airway Diseases aka asthma. To this day, Becky relies on inhaler treatments whenever she is sick. We do not know at this point if the asthma is life-long, though it is looking more and more likely that this is the case.
Because of what Synagis® did for our family to give us that extra tool, that extra protection, I want to make sure that all families of preemies have the same access to this drug for at least the first year of life during RSV season. The American Academy of Pediatrics (AAP) has put out guidelines that have reduced access to Synagis® for many preterm infants, especially the later preemies from 32-35 weeks. I support families all of the time that have fallen through the cracks of this policy and wound up in the hospital with the baby on oxygen or worse, on a ventilator. Yes, these babies can die of RSV.
Help us by signing and passing on the petition so that we can take the AAP to task for these guidelines and give all preemies a chance at a better future.
Read the petition here and pass it onto 5 or 10 of your friends, family and colleagues: http://bit.ly/RSVPetition
Deb Discenza is the mother of a girl born at 30-weeks gestation, the author of The Preemie Parent’s Survival Guide to the NICU, the head of PreemieWorld, LLC (www.PreemieWorld.com) and the moderator on the www.Inspire.com “Preemie Support” forum of 12,000+ members worldwide.