Hi Everyone,

It is important for both parents and professionals to be aware of what types of regulations are being put in place in terms of health care. I know that when my own daughter was in the NICU that she automatically received the RSV Prophylaxis. Every preemie did, in fact, as far as I know, regardless of gestational age. Makes sense, right? Well apparently the CDC and AAP are working to change that regulation and have a strong focus on lessening or potentially rejecting altogether the RSV Prophylaxis for the 32-35 weekers. Why in the world would you allow a baby that was born early and with a comprised immune system to be put at such high risk for re-hospitalization?

The National Perinatal Association (NPA) highlights the reasons as to why this specific population needs to receive the RSV Prophylaxis. Check it out at: www.nationalperinatal.org

There is a special advocacy website called Preemie Voices and you can connect to it at:www.PreemieVoices.com

I am attaching a copy of the letter I drafted and sent to the ACIP meeting in June:

Dr. Baker,

I am writing to you regarding the current debate regarding the RSV prophylaxis and the proposed changes being addressed at the ACIP meeting in Georgia.

As a prominent leader in the premature infant parenting community and the parent of a former 30-weeker baby girl born in 2003, I implore your team to re-consider the importance of this prophylaxis from not only the professional point of view but also from that of the parent. Having both distinctions myself I feel duly qualified to speak of the following points:

• From a Professional Standpoint: The RSV Prophylaxis is one of many tools to help premature infants avoid re-hospitalization due to RSV. The reality is that the prophylaxis alone has proven its ability at avoiding re-hospitalization by 55%. Any premature baby born prior to the full-term gestation of 37 weeks is, quite simply, a premature baby. All babies born prematurely have immature organs and therefore a compromised immune system. So any baby born early, in my mind, is at an extremely high risk for RSV. For all of the medical efforts taken to save this early baby from death, disability and more and then to only consider risking its health and developmental catch-up further in the first year with little or no vaccination is unthinkable.
• From a Consumer Standpoint: As a parent who has connected with millions of parents worldwide in a professional manner and otherwise, I can assure you that having a premature infant is a life-changing event for the baby and the family. Watching your newborn baby be resuscitated, stimulated, and medically administered is horrific at best. And then to have that same baby handed over to you, the parent for discharge is terrifying at best especially when considering the fact that the family home instantly becomes the new healthcare setting full of medical equipment, medications, therapies and more. Within this new healthcare setting in the home, you are subjecting everything for sterile scrutiny so that the baby might survive and thrive in its first year. With so many factors at work in a home, it is humanly impossible to expect a family of a premature infant to handle this challenge themselves 100% of the time. There has to be another tool that can be used to ensure the health and welfare of that baby. That tool that so many families have and currently depend on is the RSV Prophylaxis. To take that away partially or completely from a family already struggling with the special needs of their child is cruel. Furthermore, the costs alone for re-hospitalization are way, way higher than that of the cost of the RSV Prophylaxis for an entire RSV season. Why would we want to subject a future generation already at risk in hopes of supposedly saving money especially when the NICU stay alone is already easily 5-10x that amount? This is a preventative cost and one that should be taken seriously.

I know all too well this issue because in 2003 I gave birth to Becky, a 30-weeker preemie girl weighing in at 2 lbs 15.5 oz who had a 38-day stay in the NICU at Inova Fairfax Hospital in Falls Church, VA. After a very scary rollercoaster ride throughout her stay we were fortunate to bring her home on medical equipment, medications and the large amount of specialist follow-ups and other therapies. My husband and I felt more like medical professionals than the parents of this tiny infant as we provided her round the clock care of medical equipment operation, medication dosage, feedings of specialty formula and kept a strong eye on any and all visitors throughout RSV season.Simply put, we feared that even as well-educated professionals that were aggressively trained at discharge, we were incapable of caring for our daughter outside of the NICU. What became our mantra to help her survive and thrive at home was that medical appointment every 30 days where Becky received the RSV Prophylaxis. It was the one tool where I felt someone was on our side helping us to keep Becky healthy. Becky received a full season of RSV Prophylaxis and I am proud to say she never got RSV that year. The following year I attempted to push for another round of RSV Prophylaxis for Becky but the Pediatrician said we did not qualify for it. Becky got RSV that second year and we had numerous years of working through her asthma that resulted from what was RSV. If I had the power to institute an extra rule, it would be to provide a second year of RSV Prophylaxis automatically to each infant born prematurely as it would help not only in overall health but also immune system catch-up as well as developmental catch-up.

I am hopeful that my comments have provided your team with insight from the two special worlds that surround that fragile baby. For the sake of those comprised babies,re-consider the RSV Prophylaxis recommendations and institute stronger measures so that this is no longer an issue.

Thank you for your time and consideration in this matter. Should you wish to talk to me further, please feel free to contact me at XXX-XXX-XXXX.

Respectfully,

Deborah A. Discenza

Co-Founder, PreemieWorld, LLC

Co-Author The Preemie Parents Survival Guide to the NICU

Member, National Premature Infant Health Coalition

Member, Operation Preemie

Founder and Former Publisher Preemie Magazine

Former Board Member, Mothers of Supertwins

Former Assistant Chairperson for PreemieCare

Former Board Member, Preemies Today