During National Pregnancy and Infant Loss Awareness Month, a doctor is pushing for greater access to support and resources for families facing pregnancy or infant loss.
This is something that Dr Marta Kolthoff highlights through AHN Perinatal Palliative Care Program. Kolthoff leads the program, which supports grieving families by providing hospice, palliative care, bereavement care and other resources to families experiencing pregnancy or newborn loss.
“As a society, we do a very poor job of tackling perinatal loss of all kinds,” said Kolthoff, who is a perinatologist and reproductive geneticist. She urges health systems to make improvements in this department.
Perinatal loss, she says, is not uncommon, although it is often stigmatized.
About one in four women will experience some form of perinatal loss, Kolthoff said, whether it’s a miscarriage, defined as the loss of an unborn baby in the first 20 weeks of pregnancy, or stillbirth, which occurs after 20 weeks.
The program also offers support to families who are diagnosed that their babies will not survive long after birth due to factors such as chromosomal disorders or fetal defects.
When the AHN program started in 2016, it was one of the only such initiatives in the country, Kolthoff said. Since then awareness has spread and other hospitals have adopted similar programs, although the AHN remains “at the forefront”, with a program that continues to expand.
Through the AHN program, a team of doctors and specialists are helping patients not only with their medical issues, but also their emotional needs and grieving processes, she said.
“We are part of the networks of these families and we all become a family,” Kolthoff said. “I went to a funeral. I went to the births of the following healthy babies.
They help organize funerals for babies lost during pregnancy or soon after birth, she said, “to allow for a normal grieving process.”
They also help them make memories with their babies during their short lifetimes and offer mementos of pregnancy, like baby blankets and ultrasound photos. They can even record handprints and footprints for parents to remember the child.
“If you give them these opportunities to make memories, bond, build a relationship during pregnancy while the baby is still alive, the patient can learn from them after the baby dies,” he said. -she explains. “The relationship exists – it was real and recognized by others. “
They give parents time with their baby after a stillbirth, to allow them to bond and create memories – rather than further traumatizing mothers by immediately removing the baby, which was once considered the norm and still is. a common practice in some hospitals, Kolthoff said. .
It is important, she said, for parents to realize that their baby was “no less important than any other baby.”
In search of more awareness, compassion
The program also offers support groups and behavioral care providers. Each member of their staff is trained on how to appropriately support families throughout the process and how to be sensitive to their bereavement.
“It really tries to create a culture shift and a shift of a lot more compassion and awareness,” Kolthoff said.
All things offered by the AHN program should be made available consistently across all health systems across the country, Kolthoff said. Every family should have access to appropriate health care, as well as bereavement counseling, experts who can help them bond with their baby and have the opportunity to have funerals and memories. or photos.
“This has to be the standard of care,” Kolthoff said. “If it’s something so common and so devastating, why isn’t it?” “
During the month of October, she also urged the general public to become more aware of perinatal loss and to learn to respond with compassion.
“It’s something that is part of this human experience,” she said. “It’s something that concerns us all. “
She urged people to be compassionate with those who have suffered such losses and to be mindful of any comments they make about the loss of a pregnancy or a baby. Telling a woman that her pregnancy was bad or that her baby was not meant to live, she said, are examples of things people sometimes say that only make the healing process more difficult.
“It just takes a little awareness, mindfulness,” she said. “This is at the heart of October Awareness Month. This is something so common and so devastating and we are letting people know that there is a better way to approach it.