Dec. 4, 2013— -- This is the second story in a series about stillborn babies: How families deal with their grief, how friends can help and what medical science knows about why these babies die.
Joseph Michael was born on Oct. 17, 2008, at 27 weeks, after his placenta had separated from the uterine wall.
"I never in a million years thought that that could happen to me," said his mother, Cynthia Kolarcik, 35, from Scotia, N.Y. "You hear about it, but you don't ever think it will happen to you."
"The day I found out my son had no heartbeat was the worst day of my life, and my world came crashing down," said Kolarcik, a former autism aide. "A part of me died with him. To make matters worse, before Joseph I miscarried my daughter, Kayla, at 19 weeks. I was beyond devastated, broken and I thought I had no reason to live.
"For six months after I lost my son, I sat home and I cried every single day, and I removed myself from the world," she said.
Having a stillborn is more common than anyone would think. And obstetricians and pediatricians rarely discuss possible bad outcomes during the happy prenatal period.
The numbers are stark. According to the March of Dimes, one in 160 pregnancies, or 25,000 pregnancies a year, will end in a stillbirth, an event that happens 10 times more frequently than sudden infant death syndrome.
Often, as in Kolarcik's case, doctors can explain why a child died, but many times they have no answers.
"For the most part, we really don't understand what the triggers are that put a particular baby at more risk," said Dr. Craig Rubens, executive director of the Global Alliance to Prevent Prematurity and Stillbirth, an initiative of Seattle Children's Hospital.
"The challenge for us is that even a baby full-term can die in the womb," he said. "We really don't understand it all very well."
Finding answers is made more difficult by parents' reluctance to agree to an autopsy. And even after that, abnormalities are not always found.
"It's disheartening to go nine months and to lose a baby and still not be able to tell why," he said. "We tell the moms and dads it's not their fault, that it wasn't anything the baby was exposed to, that most of the time, it's something they have no control over, but it's still a tough thing."
Common causes of stillbirth can be mechanical, such as a cord wrapped around the neck, causing asphyxiation. As in Kolarcik's case, there can be placental problems that can compromise the blood supply to the baby.
Prenatal care can have an impact on stillbirths when pregnant women are not monitored.
In the developing world, bacterial infections can cause stillbirths, but in the United States, doctors routinely screen expectant mothers for diseases like syphilis, so it is rarely a factor.
"We do see on occasion a herpes infection that can cause a stillbirth, as well as other herpes-related viruses like chicken pox on rare occasions," said Rubens.
Some parents support groups have called for expectant mothers to perform "kick counts" to follow the baby's well-being. But Rubens said the data is equivocal.
"Some doctors think it works," he said. "But in the GAPPS program, we have looked at lots of data and have found nothing compelling enough to advocate for it."
Rubens said doctors, nurses and midwives should talk more honestly with their patients about the possibility of stillbirth.
"We want [expectant] families to have a great experience, and it puts us in a position where we aren't informing our patients about complications," he said. "We need to change that. The nature of the modern generation is that information is everything and the more you know, the better prepared you are."
Kolarcik may not have been prepared for her stillborn son, but she took action to memorialize him and to help other mothers.
When Joseph died, she and her husband didn't have the money to pay for a funeral, so someone donated a burial plot and they were offered a payment plan for a $2,500 memorial service.
"During that time I decided to take my grief and my heartache and turn it into something positive," said Kolarcik.
She founded the Joseph Michael Kolarcik Foundation, whose mission is to provide financial assistance to families of stillborn children or infants who die of SIDS.
"The foundation is my way of keeping our son's memory alive while helping families in need," she said. "If you haven't had a stillborn you don't understand how painful it is."
Dr. Rubens said parents struggle to get over the loss of a child they never knew. "You don't get over it, and you don't replace one with another infant. It's like they had a baby in their arms right from the beginning.
"It's very difficult because these families are looking for reasons and sometimes we can't give them ones," he said. "There needs to be more research. We need to understand why babies are dying and find new ways to prevent it from happening in the first place."