Last Thursday I had the honor of speaking to the Centers for Disease Control’s Advisory on Immunization Practices regarding the issues surrounding RSV Prophylaxis qualifications. With this statement I submitted 920 signatures on what I dubbed the “Preemie Petition” in support of increased access to the RSV Prophylaxis for the 32-35 weekers. By the way, at the time I presented the petition, the numbers had already gone from 920 to 943. Thank you EVERYONE who helped make this happen! I could not have done this without you.
Here is my statement to the CDC:
I appreciate the committee’s dedication to evidenced-based practice in relation to the guidelines for the RSV Prophylaxis. In accordance with that I am pleased to comment on this issue.
My name is Deb Discenza and I am the mother to a baby born at 30-weeks in 2003. In 2004 I founded and launched a national parenting magazine for parents of preemies called Preemie Magazine. Earlier this year, I co-authored The Preemie Parent’s Guide to Survival in the NICU. I serve on many national boards and committees that serve this community and every day I am in contact with preemie parents who tell me their stories.
My story is like so many out there but yet it does have its very clear message. Over 7 years ago, as I stared at my daughter in the NICU, I felt impotent to do anything for her. Doctors and nurses were taking care of her every need and I sat by watching the circus of medical equipment and professionals attend to each incubator.
At one point in the NICU stay, the Neonatologist started talking about discharge day and asked us if we knew what RSV was. My heart sank in fear as I knew all too well what this virus was. Many a friend’s full-term baby had had it and had been hospitalized and had had all sorts of issues. And here I was with a medically fragile baby in the NICU preparing to go home on medical equipment. POther than home lockdown, what else was there to help us?
The tool – RSV Prophylaxis. As the doctor continued on with her details, I found myself solely fixed on the tool itself. Why? Because I honestly felt that the RSV Prophylaxis was going to be the one thing I could truly count on to help us keep Becky protected during RSV season. No parent is 100% vigilant and it is impossible to expect any parent of a preemie to meet such unreasonable expectations. Everything was suddenly on us, but I assure you, we worked everything in our lives around those monthly injections. My husband and I were never more grateful for this help.
So I am here today to give a voice to the tiny babies, from 22 weeks to 36 weeks, that deserve the help that we would afford to anyone with cancer, anyone with diabetes, anyone with a life-threatening illness.
To support the community’s concern that we must do right by these babies, I am respectfully submitting the online signatures I collected over the last two months of 920 parents, professionals and concerned citizens of our country. As of a few minutes ago this petition was at 943 signatures.
In this petition I have a mother that cites a 34-weeker that was denied RSV Prophylaxis, hospitalized with RSV and then died of RSV. The signers of the petition, like me, view these babies as the future of our country, and that we owe them the best chance in life, just like everyone else. Thank you.