Hearing that a baby has died is devastating for families.
Which is why clinicians who share the news must be sensitive and well-trained; parents often remember the exact moment they found out for years and decades to come.
“It’s almost as if a video camera starts in their mind and they remember those details about how they were told forever,” says lead researcher Katherine J. Gold, M.D., M.S.W., M.S..
Gold and other U-M researchers recently examined the importance of this exchange in a mail-based survey of 1,400 mothers who experienced a perinatal loss — either due to a stillbirth in the second half of pregnancy or a death within the first month of a newborn’s life.
The researchers also wanted to know who was there to support the mother during delivery of a stillborn baby and who was present when her infant died.
Results showed a troubling divide: Women who had a stillbirth were far less likely to have social support — a partner, friend or family member — present at the time of delivery than women with live births.
"Parents may have lots of questions — particularly why and what happens next — and the person sharing bad news may not be in a position to answer those questions." -Katherine J. Gold, M.D., M.S.W., M.S., lead author
And the survey found that black women were less likely than white women to receive the initial diagnosis of stillbirth from a physician or midwife, hearing the news more often from a nurse or ultrasonographer instead.
“These findings were pretty poignant because it’s such a difficult experience for any woman to go through this alone,” says Gold. “It’s also worrisome because we know social support dictates outcomes for future mental health issues.”
Gold’s findings were drawn from the Michigan Mothers Study, a survey that was done in conjunction with the Michigan Department of Health and Human Services. Gold’s research, published in the Journal of Perinatology, measured longitudinal mental, physical and reproductive health outcomes among bereaved mothers and those with a live birth over two years.
Shortages in support, care
According to the National Institutes of Health, stillbirths occur in approximately 1 in 160 pregnancies. The majority of stillbirths happen before labor.
Stillbirth and infant mortality are associated with a variety of factors that include socio-economic status, older maternal age, maternal health, birth weight and preterm delivery.
There are several reasons why mothers are more likely to deliver a stillborn baby with only medical staff present and without friends or family.
“Often with a stillbirth, a baby is not full term and may be very small,” Gold says. “Women can go into labor and deliver rapidly, especially if this is not their first birth. They might deliver before a partner, spouse or family member can get to the room.”
Black babies, she notes, are more likely to be born to unmarried women, which might explain why black mothers went through a stillbirth delivery alone.
Still, Gold was surprised to find that black mothers — who have consistently had higher stillborn and infant mortality rates compared to other ethnic groups — were half as likely to have first heard about their stillbirth from a physician or midwife.
“Initially, I thought: ‘Wow, why aren’t physicians the ones telling these mothers their babies have died?’” Gold says. “I didn’t expect to find this and I think we need to understand why that is and if it’s something in the health system where we’re not treating patients equally — or does it have to do with their access to a physician or midwife?”
Finding comfort and answers
It’s common for a trained technician to administer ultrasounds during pregnancy, Gold says, which often makes those individuals the first ones to discover a stillbirth diagnosis.
Some mothers may find out their baby has died by asking during the scan; others may wait until a physician is available to explain the situation and answer questions.
“Physicians or midwives may not necessarily be the best people to share that information, but we don’t know if the people who are giving this bad news are trained to do so,” Gold says.
“Parents may have lots of questions — particularly why and what happens next — and the person sharing bad news may not be in a position to answer those questions.”
Beyond training for physicians, midwives and other hospital team members who might end up telling a mother her baby has died, Gold also indicated a greater need for loss doulas.
Doulas are not medically trained but usually assist women during childbirth and provide support to the family after a baby is born.
Loss doulas specialize in a variety of types of perinatal loss — ectopic pregnancies, molar pregnancies and other miscarriages, stillbirths and neonatal loss. They are often present with families before or during delivery.
Loss doulas can help explain to a mother what has happened to her baby and inform her of options for creating memories of their baby.
It is also crucial for health systems to provide quality support and resources for grieving mothers and families once they return home, Gold notes.
Gold says she will continue to investigate the topic and gather more details about the experiences of bereaved mothers.
Her goal: encouraging health systems to get the appropriate clinicians properly trained to deliver difficult diagnoses and support to families once they leave the hospital.
“There are a lot of issues around improving care for these families,” Gold says. “Thinking about how we support families after a death is really important.”
Article Citation: Gold KJ, Treadwell MC, Mieras ME, and Laventhal NT. Who tells a mother her baby has died? Communication and staff presence during stillbirth delivery and early infant death. Journal of Perinatology, (ePub ahead of print: 31 August 2017, doi: 10.1038/jp.2017.125
Find the original press release by Lauren Love, on the MHealth Lab blog.
Explore more research on reproductive and women's health from the U-M Department of Family Medicine.