Statistics

I've always been very good at statistics. I aced the course in high school, undergrad, and graduate school. What I didn't fully grasp while learning about probability and significance is this: Statistics mean nothing to the individual.

According to the March of Dimes Foundation, stillbirth occurs in about 1 of 160 pregnancies. Common causes include placental problems, infections, and umbilical cord accidents. About half the time, the cause is unknown. Such is the case with our Patricia. We consented to an autopsy but no cause of death could be found. We lost.

Also according to the March of Dimes Foundation, 1 in 8 babies is born prematurely. Common causes include infection, bleeding, and fetal stress. Anna's birth was actually due to a condition called incompetent cervix, where a woman unknowingly begins dilating and eventually goes into labor. According to the American Pregnancy Association, this condition happens in about 1 out of 100 pregnancies. Risk factors include previous surgery on the cervix, damage during a difficult birth, and a malformed cervix or uterus from a birth defect. None of these risk factors apply to me. We lost.

Though studies on micro-preemie survivor rates differ, we knew the chances were up to 85% that Anna would survive birth at 26 weeks. We won!

Although neonatologists are understandably hesitant to make any kind of predictions about a micro-preemie like Anna, she started out following the normal course for a baby her age. When Anna was 5 days old, our "luck" ran out. Micro-preemies like Anna are at high risk for intraventricular hemorrhaging, or bleeding in the brain. According to a 2003 study published in Pediatrics, the official journal of the American Academy of Pediatrics, approximately 5% of infants have bleeds as severe as Anna's, and only 5% of all bleeds happen as late as hers did. We lost.

The same 2003 study found the mortality rate of infants with severe bleeds to be somewhere around 75%. We won!

A 2008 study published in Pediatrics found that approximately one third of infants with bleeds develop hydrocephalus, or a buildup of fluid in the brain. We lost. Of these infants, 15% require shunts to permanently re-route fluid. We lost.

As Anna grows and develops, we cannot escape statistics. A 2005 study in Pediatrics found that 60% of children in the study with severe bleeds had cerebral palsy, 70% had mental retardation, and 92% required special services. In addition, the Hydrocephalus Association reports that an estimated 50% of shunts fail within two years and 25% become infected and require revisions. With our ability to defy odds, Anna's future is wide open!

To sum up: Statistics mean nothing to the individual. They neither frighten me nor offer me hope. If someone comes at me with statistics, I am likely to laugh or cry, depending on my state of mind. In a way, this is somewhat freeing as it allows me to have fewer expectations.  Research is necessary and important and will surely guide our treatment plan, but we will move forward on this journey and focus on Anna as an individual and our family as unique.