In 1988 Ronald Reagan declared October Pregnancy and Infant Loss Awareness Month (PAILA). That was the same year I said, “I do,” to my husband, Andy, blissfully unaware of either the sound of the President sharpening his pencil or how many babies we’d come to lose. You may not know about this month either, especially in lieu of all the hot pink athletic gear running around for Breast Cancer Awareness month. With only a dozen months and dozens of worthy causes, we’re forced to share.
The PAILA Movement began in the United States in 1987 and on October 25, 1988, President Ronald Reagan designated the entire month of October as the month to remember these little lives lost too soon. I must have been preoccupied with preparing for my wedding when Ron turned his attention toward so many silent screams those 27 years ago, because I was only made aware of the PAILA month a few years ago, long after I’d lost my babies. I’ve had 13 pregnancies and have 5 living children so I wouldn’t be surprised if others, like me, have no idea about this either. Certainly nobody is running around a football field wearing anything symbolic.
The original leaders of this movement were three gals from Wayzata, Minnesota, Sherokee Ilse, Susan Erling, and Ronda Wintheiser, who ran a nonprofit organization called The Pregnancy and Infant Loss Center. This was before computers had us all hunched over so these three ladies actually wrote old-fashioned letters and telephoned folks, urging them to join pens in yet another letter writing campaign to Congress. Many organizations threw their hats in the ring including SHARE, Empty Arms, Hand of CA, Unite, MEND and others. To celebrate their success, in the spring of 1989 hundreds of bereaved families marched on the National Mall in Washington, D.C. carrying some 500 quilts stitched with thousands baby names. The first Memorial Service for babies who died in pregnancy or shortly thereafter was held right then and there on the Capital Steps.
With the month in hand, the campaign to dedicate October 15th as Pregnancy and Infant Loss Remembrance Day (PAILRD) began in 2002. Robyn Bear, Lisa Brown, and Tammy Novak petitioned the federal government and the governors of each of the 50 states. That same year, October 15, 2002 marked the first observance of PAILRD. By then, 20 states had signed proclamations recognizing the date. As a result of the American campaign effort, the House of Representatives passed a resolution on September 28, 2006 making the date official. To date, all 50 American states have yearly proclamations, with Arkansas, Kansas, Kentucky, Louisiana, Missouri, New York, South Dakota and my own state—Rhode Isalnd—adopting permanent proclamations.
Each and every day, in communities across America, expectant moms will feel their baby’s first kick; parents will listen to their newborn’s first cry; and families will celebrate the birthday of a healthy baby.
Also each and every day, 13 babies will be lost to SIDS and other sudden, unexpected infant deaths; more than 70 new parents will have listened sadly their stillborn baby’s silence; and countless lives will be lost to miscarriage and other causes of infant death.
An excerpt from an OpEd I wrote reads: “Each year in the U.S., over 26,000 mothers deliver a stillborn child. That’s one in every 160 births. If you add neonatal death, which is the death of a baby within the first month after birth, those statistics double to equal more than the number of people dying in car accidents each year. And if you add miscarriage to the mix, one in every four women have experienced a loss that is enshrouded in secrecy.”
So what, exactly, is stillbirth? Stillbirth is the death of an infant in-utero at 20 or more gestational weeks. As I wrote, more than 26,000 babies are stillborn in the United States each year. That equals 70 babies born in silence each and every day. Almost half of these deaths occur at or near full term and often seem to be otherwise healthy babies. The majority of stillbirths (85%) occur before delivery with 15 percent occurring during labor and delivery. Nearly two-thirds of all stillbirth deaths remain unexplained but researchers believe this is due to the failure to investigate the deaths, rather than a medical mystery.
Stillbirth deaths cut across all socio-economic classes, races, religions and maternal age groups. No woman is immune. Some of the more common causes for stillbirth are uncontrolled diabetes, preeclampsia, cord accidents, infections, placental abruption or other placental problems, and birth defects or chromosomal abnormalities. The risk factors for stillbirth include advanced maternal age, obesity, smoking, uncontrolled diabetes, hypertension, and previous stillbirth, neonatal death or other fetal losses. After a stillbirth, few hospitals offer to perform an autopsy, placental exam or clinical testing to determine the cause of death and few parents have the presence of mind to ask. Mothers who suffer a stillbirth do not receive recognition in 25 out of 50 states. There is no certificate of birth, rendering these births virtually invisible.
While studies for potential strategies to prevent stillbirths are ongoing, the following are some helpful strategies for pregnant women to follow to help reduce the risk of stillbirth. And I’d add to this list one thing—deliver at a hospital with a NICU if at all possible.
- Begin to monitor your baby’s activity at around 28 weeks with kick counts.
- Don’t smoke, drink alcohol or use drugs (unless prescribed by your doctor.)
- Report any vaginal bleeding, leakage or sharp pain.
- If you are post-term, discuss options with your doctor. Pregnancies longer than 42 weeks may be at increased risk for stillbirth.
- Don’t hesitate to request a second or third opinion anytime during your pregnancy if needed to put your mind at ease.
Now let’s talk about miscarriage. Miscarriage is the term used for a pregnancy that ends on its own, within the first 20 weeks of gestation. As many as 75% of all conceptions miscarry. This statistic is an estimate for the percentage of fertilized eggs that do not go on to result in a full-term pregnancy, factoring in both known miscarriages and failed implantations that usually pass without the mother ever missing a period. About 22% of all conceptions never complete implantation. 31% of pregnancies confirmed after implantation end in miscarriage. This means that about 1 in 3 pregnancies probably miscarry but this number is from a population of women who were being closely studied and were therefore confirmed to be pregnant at the very earliest point that it’s scientifically possible to detect a pregnancy. In real life, most women find out they are pregnant at a later point than the participants in this study. For the general population of pregnant women, this is the most relevant statistic—about 15 to 20% of all women with a verified pregnancy will end up having a miscarriage.
Most doctors agree that once a fetal heart is seen beating on an ultrasound, the chance of miscarriage is much lower. Once the heartbeat is heard, usually at the end of the sixth week or beginning of the seventh, the baby has crossed a major developmental milestone and the miscarriage rate drops again. At 7-12 weeks the risk drops to 5%.
Over 80% of miscarriages occur before 12 weeks, so the chances are good for a healthy baby once you’ve finished the first trimester. Again, many individual factors are in play, but if 15-20% of pregnancies end in miscarriage and 80% of miscarriages occur in the first trimester, a safe estimate would be that in the general population the risk of miscarriage after 12 weeks is only 3-4%. After 20 weeks, when a loss would be termed a stillbirth rather than a miscarriage, the risk is around 1 in 160.
Of course none of these statistics are very comforting to expectant moms and dads whose dreams are shattered when they don’t beat the odds. We could build a stairway to heaven with all the hearts that have been broken by the loss of tiny babies. I’ve had a handful of miscarriages, myself, including the rare 3-4% variety at both 12 and 16 weeks, exams of which concluded both were “normal, male fetuses”. My son, Jonah, was stillborn at 37 weeks due to a placental abruption. None of these things were expected. Tragedy rarely is. One commenter on the above wrote, “the US with its near endless resources to provide excellent prenatal care, ranks an unacceptable 34th in the world for infant mortality.” Let’s hope that bringing awareness during this month of October will lead to improvement.