By Dr. Karen O’Brien
Never before in my obstetric practice have I taken care of so many twin pregnancies. What I witness in my own office is part of a nationwide trend: Over the last two decades, the twin birth rate in the United States rose 76 percent, from 19 to 33 per 1,000 births.
And never before have I taken care of so many twin pregnancies with complications.
The specific complication that has given me pause in the last year or two is the loss of one twin, either during or after pregnancy.
This doesn’t happen often, but I have taken care of a number of patients recently who have lost a twin during or shortly after pregnancy. And I’ve learned that though outsiders might see a glass half full, this experience is uniquely devastating, both emotionally and medically.
We must all understand that the life of one twin does not eradicate grief for the sibling who died.
The hope and anticipation of bringing home two healthy babies comes grinding to a halt. The joy of delivery is clouded by sibling loss.
As early as 18 weeks, Melissa’s identical twins showed signs of a complication called twin-to-twin transfusion syndrome, which occurs when one of the twins essentially donates blood to the other.
At 19 weeks, Melissa underwent surgery to try to correct the problem. Unfortunately, two days after the surgery, one of the twins passed away. Melissa remained pregnant for 13 more weeks and ultimately underwent cesarean section at 32 weeks.
She and her husband were able to hold the deceased twin for several hours after delivery. Her live twin did well; she spent a few weeks in the neonatal intensive care unit (NICU) and is now home and thriving.
Samantha’s twins were not identical, and were conceived through in vitro fertilization. At 14 weeks, we found that one of the twins, a boy, had several serious abnormalities. Even at that early gestational age, we knew that he would not live for long after birth, and might pass away during the pregnancy. The other twin, a girl, appeared normal throughout the pregnancy.
Samantha delivered via cesarean section at 26 weeks, in the middle of the night, when she went into unstoppable preterm labor. She spent the remainder of the night with her son, who died minutes after birth. Her daughter remained in the NICU for weeks and was ultimately discharged home. One year later, her daughter is doing well, with five teeth and just starting to walk.
How can we help families cope with the loss of a twin?
If we know that a twin has already died in utero, or will die shortly after birth, then we have an opportunity to discuss the family’s preferences in advance. We can take the time to consult with our neonatologists, who are expert in providing maximum comfort for a newborn who may only gasp a few breaths or might live for just a few hours.
Parents can plan to take photographs or make handprints and footprints, which they will be able to keep as reminders. They can anticipate being able to hold the baby as soon as possible after delivery, and for as long as possible.
Rituals to honor and remember twins who have died are most important. Both of my patients chose names for the deceased twins. Melissa and her husband had their daughter’s remains cremated and keep the urn in their home. Their live daughter will be baptized in a few months, and the priest will acknowledge and remember her twin during the ceremony.
For her son, Samantha planned a simple but beautiful Thai funeral. Buddhist monks held a thick cotton thread, a sai sin, which was connected to the coffin. This thread represented the direct transfer of the the monk’s blessings to her son.
At her daughter’s recent first birthday party, Samantha’s husband spoke of her twin brother. Many people in attendance hadn’t known that her daughter was a twin. The family plan to release butterflies at her son’s grave to remember him in a more ceremonial way.
Parents are often encouraged to try to forget the dead sibling, to rejoice for the living twin, with the distraction of the living twin making it easier for family, friends and staff to ignore the twin who died.
But --- and this is perhaps our most important lesson — we must all understand that the life of one twin does not eradicate grief for the sibling who died. There were as many dreams for the twin who passed away as for the twin who survived.
Especially hurtful have been insensitive comments such as “You can have another” or “At least you’ve got one.”
Both of my patients have found strength in spiritual and religious beliefs, and have appreciated acknowledgement and understanding from family and friends. Especially hurtful have been insensitive comments such as “You can have another” or “At least you’ve got one.”
They have had to process feelings of injustice at seeing others with uncomplicated live twins. Most acutely, my patients mourn the sibling relationships their twins would have had with each other. Their babies began, after all, by sharing the very smallest of spaces.
One regret which both of my patients shared was that they instinctively, reflexively distanced themselves while pregnant from the doomed twin. It makes sense that they would steel themselves in this way, and it was easier to do so as the babies were not quite tangible, hidden except when we did ultrasounds. Samantha feels deeply that she wishes she could retrieve that time during pregnancy, as it was the only time she had with her son while he was still alive.
As obstetricians, we strive every day for the best outcome for our patients with twins, hoping to be able to present our patients with two healthily howling babies when the time for delivery arrives. Sometimes, however, despite our best efforts, only one survives. This type of loss is especially traumatic, and we all must work together to help attenuate the pain of this most complex sorrow.
Shakespeare wrote often of twins, perhaps because he lost his 11-year old twin son Hamnet to bubonic plague in 1596. I would wholeheartedly agree with his ultimate twin goal: “We came into the world like brother and brother / And now let’s go hand in hand, not one before another.”
Dr. Karen O’Brien is an obstetrician at Beth Israel Deaconess Medical Center.