Every time their daughter Vivian twirls in her princess costume, Dimitra and Tony feel the loss of her identical twin, Stamatia Anna, who died at 24 weeks gestation when the umbilical cord wound itself tightly around her neck. Dimitra delivered a healthy baby girl and a miniature stillborn.Lindsay Campbell/The Globe and Mail
There has yet to be a moment in which Dimitra and Tony don't experience joy and grief, happiness and despair, all at once.
Every time their daughter Vivian twirls in her princess costume, they feel the loss of her identical twin, Stamatia Anna, who died at 24 weeks gestation when the umbilical cord wound itself tightly around her neck. Dimitra delivered a healthy baby girl and a miniature stillborn.
Three years later, the funeral is still hard to talk about, but because so few people talk about "twinless twins," Dimitra agreed to share her story. She asked to keep her last name private; the feelings are too raw, she says, to be completely public.
Vivian and Stamatia were delivered by emergency cesarean section on April 3, 2012. Dimitra got to hold Stamatia. The nurses wrapped her up and took photos for her album. A church group knit her a hat and blanket and took her tiny hand and footprints.
Then the nurses asked if Dimitra wanted to see Vivian. "I had just had a C-section, but I stood up and walked to her. Nobody was keeping her from me."
Hands clasped on her kitchen counter, tears streaming down her cheeks, Dimitra tells me, "I remember what happened as if it was yesterday." When we spoke, she was in her last trimester of her second pregnancy, this time with a boy. He arrived safely last month.
Over the years, society has become more comfortable talking about issues such as miscarriage, but dealing with the loss of a multiple can be more complicated. In an era in which some couples can't have any babies, and conversely, in which aggressive fertility treatments can yield multiples, we tend to think bereaved couples should be happy to at least have one child or be comforted by the idea of trying for another. We often fail to understand that when a multiple dies, the parents' joy is matched by despair; that having one, or having another, doesn't erase the memory of their baby's funeral.
Every year, more than 6,000 sets of twins are born in Canada, with the expanded use of fertility treatments contributing to an increase in the incidence of multiple births. According to Multiple Births Canada, the risk of having twins increases 20 times with fertility treatments while the risk of triplets or quadruplets increases 400 times. Multiple pregnancies are associated with low birth weights, premature birth, health conditions such as Down syndrome and cerebral palsy, and a fetal death rate that is 17.4 per 1,000 births compared to the national average of 6 per 1,000 births.
Knowing these risks, Dr. Ellen Greenblatt, medical director of the Mount Sinai Centre for Fertility and Reproductive Health, counsels couples against implanting too many embryos. "Humans are not designed to carry multiples. Anything above one baby is associated with increased risk of complications to the mom and the fetus, including premature and extreme premature birth."
Single embryo transfers result in healthier babies and a cost savings to the health-care system, Greenblatt says. It can also lower the emotional toll experienced by couples who parent twins, which is greater if there are health problems related to prematurity.
Natalie Segall, a grief educator, counsellor and consultant in Montreal, says it's called complicated grief; when you feel happy and sad, regret and excitement at the same time.
"Yes, it's great that a child was born, but you also have to cope with the primary loss, that a human child died," says Segall. "The secondary loss is the loss of grandchildren and accomplishments from this child, the loss of a sibling for the surviving baby, of being able to read your kids a story. There are a lot of aftershocks, like an earthquake."
The loss feels magnified when friends and family inadvertently say the wrong thing or nothing at all.
Experts describe our culture as death phobic and grief illiterate. "The North American mentality is to find closure, let go, move on," says Segall. "Those are not helpful words. There is no closure because the sadness is with you for the rest of your life."
"People told us we were lucky to be having one," says Dimitra, who conceived twins naturally. "I knew I was lucky – some people can't have any children – but even the mental-health professionals I saw were in disbelief. They didn't know what to say to help me. Nobody understood. I was left to deal with all the pieces myself."
There are programs that help families deal with the loss of a child. At the Hospital for Sick Children in Toronto, a grief-support program, offered through the Paediatric Advanced Care Team, provides counselling and advice to parents who have lost a child, whether an hour old or 18 years old, and the support can continue for years. In the Neonatal Intensive Care Unit (NICU), a new-parent liaison position, created two years ago, helps support families of critically ill infants and can provide guidance for families experiencing the death of their baby. The liaison is staffed by Rita Visconti, a mom who herself lost a triplet; it's what makes this program extra special.
"I know how important it is to honour your deceased child and to acknowledge him," says Visconti. After years of fertility treatments, she and her husband were thrilled to find out they had become pregnant with triplets. "We knew there were risks, but we were so happy," she says.
The risks materialized early. At 14 weeks, Visconti went on bed rest; at 23 weeks, she was admitted to hospital; and at 30 weeks, Sophia, 2.8 pounds, John, 2.12 pounds, and Mark, 3.4 pounds, were born. Mark quickly developed necrotizing enterocolitis, a complication of prematurity, and died within five days of his birth.
"Until it happens, you don't know how scary and overwhelming this is. The nursing and medical staff at the Hospital for Sick Children were amazing," Visconti says. "They let us spend time with Mark before he died. We held him, baptized him and created prints of his hands and feet. We never felt rushed to let go even after he died. The Pathways grief support program has continued to guide us since then – even now that Sophia and John are eight years old."
Visconti knows that the greatest support is finding ways to remember. The Pathways program sends cards to families when milestones, such as Mother's Day and Father's Day and the anniversary date, approach. They hold remembrance gatherings for the NICU each year so bereaved parents can meet. Families hang a personalized crystal teardrop on a memory tree to honour their child. When surviving siblings are older, it's a good space to help them understand what happened to their brother or sister.
Staff who run the program help families feel less alone and they support them as they find their new "normal." They let bereaved parents know that everyone's grief is different, but there is always a mixture of emotions: sadness, happiness and guilt.
When it felt like nobody else understood, when she felt all alone in the last stages of her pregnancy knowing only one twin would survive, Dimitra found comfort in writing letters. She wrote some to Stamatia and to Vivian, and some just for the sake of writing. She listened to music. She prayed. She talked to her family and to her girls.
"I apologized to Stamatia," Dimitra says. "I told her I'd never forget her. I asked her to be Viv's guardian angel and protect her. She will always stay with me. Always."