My friend Keira contacted me about a month ago about speaking at the CDC regarding RSV. She informed me that up until now all guidelines for infants and children who are to receive Synagis were left up to the American Academy of Pediatrics. Now, the CDC is going to be involved. On June 24th there will be a forum open to the public for those who would like to share their story of RSV. They are especially wanting stories of those infants who were term and had an RSV experience because these are the infants who don't qualify (as of right now) for the Synagis. Turns out, I won't be able to speak because of the time frame with swim lessons and basketball camp but Keira had me write out what I would have said and she is going to read it for me! Hopefully, some policies/guidelines will change for our little ones. Below is what I wrote for Keira to read. I also attached some pictures to the email for her to show. I am not going to include them because they make me sad. :( One was of Anna in the hospital with her oxygen and then one was of her at Easter this past year with the flowers in her blue dress.
Our RSV experience came about in December of 2008. Our daughter, born Dec. 13th, 2008 was 38 weeks and 3 days and came home with us, term and healthy. Our son, who was just shy of 4 years old at the time was finishing up Christmas parties at pre-school before the holiday break. According to my mom, who accompanied my son to the party, a set of twins in his class had a horrible cough and constant, thick drainage from their noses. Three days later, my son exhibited the same symptoms with a fever as well. We took him to the pediatrician where were given antibiotics only because we had a newborn at home. We were told though that he could still hold the baby, but I, being a NICU nurse quarantined her to her room. We tried to keep my son in his room and playroom as much as possible and away from his sister. But, about four days after she woke up with thick discolored drainage from her nose and I knew then that it must be RSV. She ran a mild temperature and we took her to the pediatrician. We were told it was just a cold, which RSV is to most, and to use lots of saline drops and bulb suctioning. No RSV test was done. Over the course of the next couple of days, her eating habits declined and I noticed her color getting paler. All of this noticed, nothing could have prepared me for what would happen on the night of Dec. 29th, 2008. As I was rocking her, begging her to eat, I sensed something. She was not breathing. I had to perform CPR on her and we were then rushed to the emergency room where she was diagnosed with RSV. We later discovered that she had pneumonia and a bacterial infection in her blood stream as well. Our admitting doctor told us that because her lung tissue was weakened with the RSV, it made it easy for the pneumonia to harbor. Had I not been with her in that room, she may not be with us today. We were in the hospital for 10 days and thankfully never on the ventilator (breathing machine). After we were discharged home, we remained under house arrest until she was 10 weeks old. We did not qualify for Synagis for the future months. This was a scary awful time for us and one that I want no one to have to go through with their newborn, or child of any age. Most that I tell this story to have never even heard of RSV. Education is prevention and prevention is key when saving our children's lives.
I'll let you know what Keira learns while she is there. Also, Keira is president of the Zoe Rose Memorial Foundation (see list of blogs to left) and they are having golf tournament on June 26th. I will be volunteering at the event that day and if any of you would like to join me, send me an email or leave a comment (firstname.lastname@example.org). Keira still needs 6 volunteers. It's for a great cause!