Telling their child’s story can be an important part of the healing process for parents whose baby is stillborn, says Heather Florescue.
For families who lose their child on the same day they welcome him or her to the world, the thought of talking to others might feel impossible. And friends and loved ones might feel it would be too painful to bring up the loss.
Florescue, an obstetrics & gynecology provider at Highland Hospital at the University of Rochester Medical Center and medical advisor at Star Legacy Foundation, works closely with these families, and one thing she focuses on is ensuring their stories are heard by a comforting ear.
She is working hard to share stillbirth prevention and awareness information with both the public and the medical community.
Here, she offers six things everyone should know about infant loss:
1. All pregnancy loss is not the same
The term “pregnancy loss” is often applied to many kinds of loss, including miscarriage, stillbirth, and infertility. But this vague term can’t summarize the experiences of all families who have lost a child.
- Infertility refers to an inability to become pregnant.
- Miscarriage is the loss of a fetus before the 20th week of pregnancy.
- Stillbirth is when the child has died in the womb before birth.
It’s important to define the loss in this way, because different experiences need different processes of healing.
2. Stillbirths are not rare
According to the Centers for Disease Control and Prevention, 21,000 babies that were born in the United States in 2021 were stillborn. While it is not common, it is not as rare as many people assume.
Approximately one in 170 pregnancies that reach 20 weeks results in stillbirth. According to Florescue, that makes it 1,000 times more common than losing a child during pregnancy from the foodborne illness listeriosis, which can come from cold cuts and undercooked food. Yet that illness is discussed more often than stillbirths.
3. People who have lost a child likely want to talk
Infant loss is a difficult topic, and it can feel taboo to talk about. But speaking about a lost child can help greatly with the healing process. Florescue has seen many friends and family members of someone who has lost a child struggle to find words of support.
She suggests friends and loved ones ask about the child’s name and ask to see a photo. As time passes, acknowledge the days that would have been a milestone in the child’s life, like birthdays and holidays.
“The parents will be so happy to hear that someone else remembers their baby,” Florescue says. “It’s important to show them that they are not fully responsible for the legacy of their child.”
4. Stillbirths do not always have a clear cause
One common assumption is that stillbirths are caused by problems with the umbilical cord. While approximately 20% of stillbirths are related to the umbilical cord, most do not have an obvious cause. Research suggests that most stillbirths are probably related to issues with the placenta, but this is not yet confirmed.
Florescue urges families to ask questions if their child dies during childbirth. “When we don’t seek tests or answers, it can be even harder to go through the grief. I encourage people to do everything, including autopsy.”
5. You know your baby
If you’re pregnant and are worried about your baby’s movements, don’t hesitate to call your provider. “You’re never bothering us,” Florescue says.
She also discourages the use of home dopplers if you’re concerned about the baby’s movements. Home dopplers, which can allow the family to hear the heartbeat, can give false reassurance, as a baby with a heartbeat may still be in extreme distress.
Families and friends of people who are pregnant also need to be aware that frantic increases in movement or lack of movement could signal that something is wrong. For those who have had their own pregnancies, Florescue advises against offering advice based on personal experiences.
“Tragedy unfortunately can happen if worries are dismissed. If someone you love says ‘I’m worried about my baby,’ tell them to call their doctor.”
6. Support is available
Through her work with the Star Legacy Foundation, Florescue has started a library program in all the hospitals in the greater Rochester, New York area. Families who experience infant loss have the option to take a book home from the hospital, noting their child’s name in the inner cover. While in the hospital, they can read the book to their child, making a special, lasting memory. Hospitals around the country have reached out to Florescue, looking to integrate a similar program into their obstetrics department.
Star Legacy Foundation has many additional free resources for those who have experienced a perinatal loss, families and friends of those who have lost a child, and people experiencing pregnancy after a loss.
Star Legacy Foundation has virtual support groups that are tailored to the unique experience of each family. They also offer a peer support program, for people to speak directly with someone who has experienced a similar loss.
Source: Sydney Burrows for University of Rochester
