A Ray of Light Amidst Darkness

  by Kristina Rolfes

 A small Baltimore nonprofit works to bring awareness and research into the causes and prevention of stillbirth, bringing hope to parents who have lost a child.

Rachel Blair of Fort Worth, Texas was a few days past her pregnancy due date when she became concerned about her baby’s lack of movement. A few hours later at the hospital, a doctor gently broke the news–her baby no longer had a heartbeat. She delivered a still, lifeless son, still warm from her womb. Her doctor told her the baby died of a compression in the umbilical cord, although no autopsy or tests were ordered.

Blair’s story is not uncommon. There are an estimated 26,000 stillbirths (defined as fetal death after twenty weeks of gestation) per year in the U.S., ten times the number of deaths from SIDS. Many of these stillbirths occur in the late stages of pregnancy when the baby would otherwise be viable. There is no known cause for more than fifty percent of stillbirths, partly because of a failure to investigate the cause of death. First Candle, a small Baltimore nonprofit, is hoping to change that.

Formerly the SIDS Alliance, First Candle is the same organization responsible for the “Safe Sleep” campaign, which has reduced the number of SIDS deaths by sixty percent. In 2003, the organization broadened its mission to include stillbirths and SUID (sudden unexplained infant death) and was renamed “First Candle”–its mission to help all babies reach their first birthday.

First Candle is championing legislation that would bring research into the causes and prevention of stillbirth. The Stillbirth and SUID Prevention, Education and Awareness Act will create a national stillbirth registry so that all deaths will be recorded.

Right now, “parents [of stillborn children] feel their babies are invisible. They didn’t really count,” says Laura Reno, vice president of public relations at First Candle. “Without [this bill], we can’t know the number of babies dying and how they are dying.”

After a baby dies from stillbirth, an autopsy is not required, nor is it routinely encouraged. It is up to the doctor to order tests on the placenta or clinical exams to determine the cause of death. In early 2009, the American College of Obstetricians and Gynecologists recommended standard protocols for evaluating and classifying stillbirths, but no legislation is in place to ensure compliance. According to the CDC, more causes of stillbirth could be identified if thorough investigations were performed, including an autopsy, placental exam, and genetic testing.

Mothers of stillborn children are mystified when doctors can’t tell them what went wrong. Some of the most common diagnosable causes of stillbirth are placental abruption and other placental problems, chromosomal abnormalities, preeclampsia, cord accidents, and infections.  But many stillbirths remain unexplained.

“So many women are searching for answers and are told ‘no one knows why your healthy baby just died inside of you.’ It truly is heartbreaking and I’ve read [about] so many hundreds of women who are trying to deal with this,” says Blair.

Laura D. Cooper, 38, of Austin,Texas was told before delivery last November that her baby died due to a placental abruption. She and her husband declined an autopsy after her doctor told her it was unnecessary, but later testing of her placenta showed no evidence of an abruption. She will never know why her baby died.

Despite the large number of stillbirths that happen every year, pregnant women are largely unaware that their baby could suddenly die inside their womb. Women begin to relax after making it through the first twelve weeks of pregnancy when a miscarriage is most likely to occur. Doctors don’t mention stillbirth, perhaps not wanting to scare patients. “We were completely unprepared since we had no idea that stillbirth was even a possibility,” says Cooper.

First Candle wants to increase awareness and education about stillbirth. The organization recently rolled out the first stillbirth prevention strategy–the “Kicks Count” campaign, which recommends that pregnant women monitor their baby’s movement starting at twenty six weeks gestation. If movement slows down or stops, women are urged to call their doctor. Researchers are split on the efficacy of kick counting. Some say it works, while others say it has no effect. One thing is clear–kick counting is not the silver bullet that will prevent all stillbirths. Much more research is needed.

While SIDS receives over $20 million in research funding, stillbirth research receives less than $6 million. “Stillbirth is where SIDS was twenty-some years ago–there was no research being done [then]. You couldn’t get anybody to pay attention to SIDS,” saysReno. “The catalyst was when we found prevention strategies.”

An estimated 35,000 lives have been saved in the past ten years due to the “Safe Sleep” campaign. It has been proven that putting babies to sleep in a safe sleeping environment reduces SIDS. First Candle hopes that similar prevention strategies can be implemented for stillbirth, and lives can be saved.

Once a baby takes a breath, the baby is considered a person and receives a birth certificate. But if the baby dies minutes before while in the womb, it is considered a fetus. Maryland is one of the few states that now recognize a “birth certificate resulting in stillbirth.” For the other 37 states, stillbirths are not counted and mothers are left feeling like their babies didn’t matter.

For the thousands of women who have lost a child, their grief is all-consuming. Well-meaning friends and family say hurtful things, like “it was God’s will,” or “you will have other children.” Mothers who carried and loved their babies through months of pregnancy are devastated when others urge them to move on and forget. Mothers feel their babies never existed in the eyes of others. Since no one else saw or knew their baby, others can’t understand their grief.

Parents leave the hospital with a memento box filled with footprints, a blanket, a lock of hair, and grief pamphlets instead of a baby, and are left to mourn alone. They visit their child’s grave, especially on birthdays and anniversaries of due dates, leaving toys or trinkets for their loved one. Or they place their child’s ashes in an urn to keep them close.

Parents never get over the loss of a child, but for many, the desire to have another child is overwhelming. Women who have suffered a previous stillbirth are often terrified of a similar outcome in subsequent pregnancies, especially if no cause was found for the first one. Intensifying their fears is the fact that a previous stillbirth is one of the risk factors for stillbirth. Other risk factors include advanced maternal age, obesity, smoking, diabetes, and hypertension. But in some cases of stillbirth, the mother has none of these risk factors. Women are left wondering if lightning will strike twice, and doctors can do little to assuage their fears.

For Blair, a second pregnancy brought worry and fear. She didn’t tell anyone she was pregnant at first because she was sure she would lose her baby again. During her second pregnancy, she developed a blood clot and was diagnosed with a clotting disorder.  Specialists told her this disorder could be the cause of her previous stillbirth. She was treated with blood thinners and baby aspirin during her second pregnancy, and delivered a healthy girl, and another two years later. She wonders whether a simple blood test during her first pregnancy could have kept her son alive.

The sheer number of stillbirths that occur each year–about the same number as all infant deaths combined–is becoming impossible to ignore. According to the National Institute of Child Health & Human Development (NICHD), infant mortality decreased by about thirty-two percent between 1985 and 1998, while the stillbirth rate declined by only fourteen percent. NICHD is sponsoring the Stillbirth Collaborative Research Network, a major multicenter research study into the causes and prevention of fetal death. Once the results are compiled and studied, researchers can begin to discover patterns and risk factors, and doctors can be educated on how best to prevent stillbirths.

Labor and delivery nurses by necessity have developed effective protocols for managing a stillbirth once it is imminent. A marker is attached to the patient’s hospital door to alert everyone on staff that a baby has died. Nurses prepare the mother by describing what the baby may look like after delivery, for example that the baby’s skin may be peeling and discolored. They encourage the mother to hold her baby and take pictures. Nurses understand that parents are suffering from shock and grief, and may come to regret not seeing or holding their child, or taking pictures.

Heather Ruha, 26, of Kenosha,Wisconsin lost her baby three weeks before her due date. A nurse encouraged her to hold her stillborn daughter and take pictures, for which she will always be grateful. “I look at those pictures every day and couldn’t imagine not having them,” she says. She studied her daughter’s delicate face after delivery but was afraid to look at the rest of her body. If not for the nurse who gently unwrapped the blanket from her daughter, she would never have seen her baby’s tiny arms, hands, and toes, images that she will treasure.

This October, mothers will unite for Pregnancy and Infant Loss Awareness Month. On October 15 at 7:00 p.m., candles will be lit around the world in remembrance of lost children. Pink ribbons will be worn to create awareness. And this year, parents will have renewed hope that their losses will be recognized with the passage of stillbirth legislation.

First Candle is hopeful this bill could lead to thousands of lives saved. For mothers who have already lost a child, it means validation of their loss.

“My eyes teared up simply reading [about the bill],” says Ruha. “It would mean a lot. I think it would be very healing for mothers.”