Parents of preemies describe the experience of having an infant in the neonatal intensive care unit, whether for four weeks or four months, as stressful, frightening, exhausting, and isolating. For many, the NICU journey represents both a family and a financial crisis.
Babies born extremely premature are often in critical condition with health problems that will last for several weeks, months, or possibly a lifetime. Parents of preemies face life and death decisions while trying to comprehend the medical issues their baby is struggling to overcome, and feel terribly alone, isolated from friends and family because the serious risk of infection from visitors means casual visits could have grave consequences to their babies’ health.
Research shows that parents of preemies struggle with clinical depression, anxiety, and PTSD. But research also shows that parents who receive support from other parents of premature babies feel less stress, and report fewer symptoms of anxiety and depression.
We set about determining how much money is invested annually to improve outcomes for preemies, but because prematurity is still considered an occurrence and not a diagnosis it makes it difficult to track.
For perspective, there are about 10,000 case of pediatric cancer per year in the US and roughly $180 million dollars a year goes into pediatric cancer research. About 50,000 kids in the US each year are diagnosed on the autism spectrum disorder. About $175 million dollars a year goes into research focused on autism spectrum disorder.
Every year in the US about 60,000 very low birth weight babies are born. As survival rates continue to improve we will be facing a new population of kids coping with the long-term impact of prematurity. How much funding is going toward improving our understanding of prematurity and improving long term outcomes for our little ones? Does anyone think we’re doing enough already?
There are large, well respected organizations fighting every day for many worthy causes. But who is fighting to improve the outcomes for preemies? Graham’s Foundation is the sole organization working to support parents directly while also working to improve outcomes for whole families now and in the future.