For the first time, more stillbirths have been reported nationally than infant deaths -- yet stillbirths remain an often overlooked public health issue, which some parents are trying to change.
A total of 23,595 stillbirths occurred in 2013, compared with 23,446 infant deaths, according to a July 23 report from the federal Centers for Disease Control and Prevention. Stillbirths are defined as fetal deaths from 20 weeks of gestation or longer.
The report's authors said that while there has been a decline in infant mortality -- deaths before the first birthday -- there has been comparatively little decline in stillbirths.
That's because much of the focus has been on reducing infant mortality, while the causes of stillbirths remain less clear, said Dr. Uma Reddy, a maternal-fetal specialist in the National Institute of Child Health and Human Development, part of the National Institutes of Health.
"There's very little research on it, although it's hard for both families and physicians," she said. "It's a devastating outcome and a horrific experience."
That was true for Phillipa Martin of Port Washington, and one for which she was unprepared.
She said her first pregnancy had been difficult, requiring bed rest from 20 weeks on, although she delivered a healthy boy, now 3 years old. By comparison, she said, she had sailed through her second pregnancy and nothing seemed amiss at her 38-week checkup, when a baby is considered full term.
Yet several days later, on Jan. 27, she no longer felt the baby moving. She went to see her doctor at North Shore University Hospital in Manhasset. After several frantic efforts with the ultrasound machine to try to hear the baby's heartbeat, the doctor told her, "I'm so sorry, he's gone," she said.
Then began the ordeal of delivering a dead baby.
Martin, 39, opted for a cesarean section, as she had for her first child. During her first C-section, the doctors were talking and joking, she said.
"But this time, it was really quiet. Nobody was talking," she said. "It was unreal, surreal, the cruelest thing I could think of."
The 8 pound, 15 ounce boy she and her husband named Brandon was otherwise perfect, she said. Tests and an autopsy showed nothing conclusive about why he died.
That is often the case. The cause of about one half of stillbirths is undetermined, according to The Stillbirth Collaborative Research Network -- of which Reddy is a member.
Established by the NIH in 2003 to look at the causes, demographics and trends of stillbirths, the network said they occur in about 1 out of every 160 pregnancies in the United States.
And certain groups are at much higher risk. Black women are more than twice as likely to have a stillbirth compared with white women, and the risk is slightly higher for most Hispanic groups, CDC statistics show. The CDC report attributed some of the disparity to racial differences in access to quality health care, but said much of it "remains unexplained."
Teens and women ages 35 and older and unmarried women are also more likely to have stillbirths, and male fetuses and multiple fetuses are more likely to result in fetal deaths, the report showed.
About 24 percent of stillbirths come from problems with the placenta, 14 percent occur in babies with birth defects and 10 percent involve accidents with the umbilical cord, according to the March of Dimes.
Reducing the risk
Doing all the things a pregnant woman needs to do to have a healthy baby -- not smoking, drinking alcohol or using illicit drugs, and controlling weight and chronic conditions such as high blood pressure or diabetes -- can reduce the risk of a stillbirth, said Dr. Edward McCabe, chief medical officer for the March of Dimes. But, he said, "Often it's nothing that the mother does; it just happens."
"The good news for moms is that less than 1 percent of those who had a stillbirth go on to have another stillbirth," he added.
New York's rate of stillbirths over a three-year period -- 4.40 per 1,000 births -- is higher than the national average of 3.98 per 1,000 births, the CDC reported.
McCabe said New York's ethnic and racial diversity could account for much of the state's higher rate.
New York City accounts for about two-thirds of stillbirths statewide, according to state Department of Health 2013 statistics. Nassau and Suffolk lead other counties outside of New York City, accounting for about 8 percent of stillbirths statewide.
The possibility of a stillbirth is not something that occurs to most expecting parents or that is routinely mentioned by obstetricians. When it happens, it's a crushing loss that leaves parents grieving and often isolated.
A study published this month found that nine months after a stillbirth, mothers were four times more likely to suffer from depression and seven times more likely to have post-traumatic stress disorder compared with mothers of live babies.
"Most of us think if we make it to week 12, nothing will happen," said Danielle Singson of New Hyde Park, 31, an orthopedic nurse at North Shore with two daughters. "It's more common than we think, but nobody wants to talk about it."
Singson delivered her stillborn son, Ryder Callum, March 28 after she learned at 29 weeks that his brain hadn't developed properly and he had died in utero.
The hardest part for her, she said, was having to go through hours of painful labor listening to the happy sounds of other babies being born.
"I turned to my husband and said, 'I can't do this. I'm not going to hear my baby cry.' "
Dr. Serena Wu, a maternal-fetal specialist at Good Samaritan Hospital Medical Center in West Islip, said doctors often have a hard time talking about the possibility of something going wrong, if only not to stress an expecting mother at an already stressful time.
"I think what is needed is dialogue," she said. "OBs are not very good at talking about the possibility of things going wrong."
Catholic Health Services recently started a free program called Gabriel's Courage for any family on Long Island that learns it will lose the baby before he or she is born. A clinical social worker comes to the home and helps the family decide how to honor their child's life and death.
Winthrop-University Hospital in Mineola has an interdisciplinary team trained to support the family and North Shore, which also has a team, offers a six-week support group four times a year open to all parents.
For both Singson and Martin, the support group, overseen by social worker Ivy Diamond, was a godsend.
Women in the group of about 14 said that family and friends were often uncomfortable talking about the loss. Finding parents that shared the same experience helped relieve some of the almost unbearable grief.
"It was very important to be in contact with people and to realize I wasn't alone and wasn't going crazy," said Lourdes Fanning, 40, of Massapequa. After a normal pregnancy, Fanning's daughter Siena died at 38 weeks, five days before she was scheduled to be delivered by a C-section. She said it wasn't clear why she died. "They have no answers," she said.
Suggestions from parents
The group has had another, unforeseen, benefit.
Every woman interviewed uniformly praised the sensitivity and compassion of the North Shore doctors and nurses that cared for them. But, as a group, they had some suggestions on how the hospital could make it easier on parents. Several members met with North Shore nurses, doctors and social workers to make recommendations -- many of which the hospital has adopted or is seriously considering.
"These were thoughtful suggestions and realistic for the most part," said Cynthia McKie-Addy, director of patient care services for obstetrics at North Shore.
Some changes are small, such as not placing the stillborn baby in a metal bassinet -- which makes a hollow, ringing sound -- or removing all newborn-related objects from the room. Some family members said it was excruciating to sit with other joyful expectant parents in the waiting area, so the hospital is ordering pagers to allow them to go to a quieter place to wait for the delivery.
McKie-Addy said a new training video on stillbirths that will be required for all employees at the hospital is almost complete -- and will feature some of the parents in the group discussing their experiences. And after some of the parents complained they were given incomplete or wrong information about what to expect after the delivery, McKie-Addy said the hospital has a new patient handout.
The group, many of whom have become close friends and continue to meet, also are looking for professional photographers willing to donate their services at the hospital.
"I have to give them credit; they have been receptive," said Theresa Juva-Brown, 31, of Bayside, speaking of North Shore. She lost her daughter, Eleanor, who had a genetic disorder, at 25 weeks in late March. "They took us seriously right off the bat."
Juva-Brown and several others in the support group are also joining a new metropolitan-area chapter of the group Star Legacy Foundation. Lindsey Wimmer, a pediatric nurse practitioner in Eden Prairie, Minnesota, started the foundation after she had a stillborn son in 2004, to raise awareness and promote research on the issue.
For Juva-Brown, it's part of a vow she made to her daughter.
"The first time I saw Eleanor dressed so beautifully in her coffin, I leaned over and felt her cold skin, and my heart broke into a million pieces," she wrote in an email. "I whispered to her and promised I would make sure something good comes out of our tragedy."