Rosie Caietta-Khorrami cried upon learning she was pregnant for a second time. Her joy was mixed with anxiety and heartache.
Eleven months earlier, on Sept. 11, 2013, Caietta-Khorrami had given birth to a stillborn baby girl after four heavily medicated days of labour. The pain and shock of a child dying at 38 weeks of pregnancy had thrown her into depression, and the Bradford, Ont., resident feared going through it all again.
The same thought kept echoing in her mind, she says: Is this one going to make it? Is this one going to make it? Is this one going to make it?
Statistics Canada records roughly 2,800 stillbirths a year nationally and more than 1,800 babies die within the first year of life. For women such as Caietta-Khorrami, who have experienced such a loss, going through pregnancy again can require extra medical, psychological and social support. Yet health professionals say many struggle to get the specialized care they need.
A group of experts from around the world is hoping to change that. Earlier this month, representatives from as far as Australia and the Netherlands met in Vancouver with the goal of creating standards of care for families expecting a child after a stillbirth.
The group of about 35 clinicians, nurses and parents, led by Toronto's Sunnybrook Health Sciences Centre and the Britain-based Tommy's maternal and fetal health research centre, is aiming to form an international consensus by early next year on key areas, such as how to screen and monitor women during subsequent pregnancies, methods of delivery and psychosocial care. Their guidelines would be adopted and endorsed by the various organizations they represent, such as the Society of Obstetricians and Gynaecologists of Canada, the American Congress of Obstetricians and Gynecologists and Britain's Royal College of Obstetricians and Gynaecologists.
"Many of these women have almost like a PTSD [post-traumatic stress disorder] kind of syndrome when they become pregnant [the] next time, just waiting for something awful to happen," says Dr. Jon Barrett, division chief of maternal-fetal medicine at Sunnybrook. "So it takes a special sort of team approach to deal with these patients."
Women who've had a stillbirth are also at an increased risk of having another stillbirth, adds Dr. Jennifer Blake, chief executive officer of the Society of Obstetricians and Gynaecologists of Canada. And stress during pregnancy can be harmful to both the mother and the developing baby's health. Having an international agreement would make it more persuasive for hospitals to devote more time and resources to these patients, she says.
Sunnybrook is one of few hospitals in the world with a specialized program dedicated to caring for families after a late-term loss or neonatal death. Its subsequent pregnancy program began as a pilot project in July, 2014, in response to gaps in care that its patients identified.
One of the main issues the program tackles is providing continuity of care, says Megan Fockler, an advanced practice nurse who leads the program. Families who have suffered a loss often find it difficult to have to repeatedly tell their story to each of the different health professionals they encounter, she explains.
To help address this, Fockler acts as a health navigator for patients involved in the program. She personally attends various outpatient clinic appointments with them, she makes herself available over e-mail and by phone to respond to their questions and concerns in a timely manner, and she welcomes women who want to come straight to her office before appointments since some of them feel anxious sitting in a waiting room with other expectant mothers and babies.
The program also allows women to request the same ultrasound technician throughout their pregnancy. And it refers them to various supports, including psychiatric care, peer support groups, public-health nurses and lactation consultants.
"It's a program no one really wants to be a part of. No one really wants to qualify for it," Fockler says. But so far, the response from families has been positive, she says. To date, 23 healthy babies have been delivered through the program.
Among them is seven-month-old Aaliyah, Caietta-Khorrami's daughter. Caietta-Khorrami explains it was only during her pregnancy with Aaliyah that she found out she had pre-eclampsia, a complication involving abnormally high blood pressure, as well as signs of multiple sclerosis. Doctors who handled her first pregnancy had not picked up on these signs, she says. They did not tell her what actually caused her baby's death, nor were they very forthcoming with information, she adds.
By contrast, she says she found support and reassurance from Sunnybrook's subsequent pregnancy program, as Fockler and her doctor readily answered her questions and kept close tabs on her health.
From her experience, Caietta-Khorrami says families who've experienced loss need that extra attention. "They need the support team. They need the communication. Even … if they say they're fine, they're actually not fine," she says. "They need someone to just listen."
Still, she felt nervous throughout her subsequent pregnancy. And finally giving birth to Aaliyah in March via cesarean section brought flashbacks of giving birth to her first child, a daughter she named Jasmine, whom she delivered on a Thursday and buried the following Monday. The two babies looked so similar, Caietta-Khorrami felt as though she were in shock. "Carbon copy," she says.
The loss is something she says she won't forget. Caietta-Khorrami tries to visit the cemetery once a week, and leaves toys and wreaths for Jasmine. For Halloween, she'll leave a small pumpkin. And when Aaliyah is old enough, Caietta-Khorrami plans to tell her all about Jasmine.
"Some people like to forget," she says. "I don't."