occupy
Each of us knows someone that had a preemie and a tale to tell about the roller-coaster of the early birth. The stories often liken preemies to warriors and fighters as they struggle to live against all odds in the Neonatal Intensive Care Unit (NICU). It ends much like a bow on a present: a life full of joy and possibilities.
Yet the fairytale comes crashing down as these babies go home from the NICU, there are still challenges for the first year or more in terms of avoiding re-hospitalization so they can properly build up their immune systems. The primary enemy for them is Respiratory Syncytial Virus (RSV) a cold that hits the public during the winter months each year. For adults, this is a minor cold. For fragile infants, RSV can land them in the hospital, on a ventilator, and fighting for their lives once again. It is potentially fatal for preemies and even for a healthy newborn.
Preventing RSV
There is one preventative solution to this risk and it is called Synagis. This drug is given monthly by injection during the winter months because premature babies can get re-infected with RSV numerous times in one season. It can be expensive, but it is a drop in the bucket compared to a Pediatric Intensive Care Unit (PICU) stay for a baby, not to mention the ongoing health issues afterward for those who survive.
What is so maddening is that the American Academy of Pediatrics (AAP) had RSV guidelines that used to recommend this drug for all premature babies. However, citing cost-effectiveness, the AAP has recommended reducing dosages per season while also disqualifying the later pre-term babies altogether. All of this has been done without sound clinically-based evidence. How is a PICU stay cost-effective after a costly NICU stay?
It just does not add up.
Take action
Join me in the fight to save these babies from this deadly illness. By signing you are helping to tell the AAP that they need to revise their guidelines so they are in line with the 2012 National Perinatal Association’s RSV Guidelines and give every preemie a fair chance at life.
Sign the petition here and please share it on your Facebook status for one day, tweet it to your followers on Twitter, and email the link to your list of family and friends asking them to sign. A minute of your time could easily save 500,000+ babies each year from this deadly illness.
Deb Discenza is the mother to a premature baby girl born at 30 weeks gestation. Her daughter received Synagis and is today a healthy nine-year old. Deb is the author of The Preemie Parent’s Survival Guide to the NICU, available at www.PreemieWorld.com and a moderator on the Inspire Preemie Support Community at http://www.inspire.com/groups/preemie/