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Seen and Supported: Care for Women Facing Perinatal Loss

Marta Kolthoff, MD, a perinatologist, and the winner of a 2018 Health Care Heroes award for her work in implementing the Perinatal Palliative Care program.

Marta Kolthoff, MD, a perinatologist, and the winner of a 2018 Health Care Heroes award for her work in implementing the Perinatal Palliative Care program.

Allegheny Health Network (AHN) perinatologist Marta Kolthoff, MD is a reproductive geneticist, meaning she trained in obstetrics and gynecology (OB/GYN) and completed a fellowship in reproductive genetics. She practices in the maternal-fetal medicine division of AHN at West Penn Hospital.

After many years in patient care, Dr. Kolthoff took special interest in perinatal loss and the intense grief that can come with it. This loss includes miscarriage, stillbirth, life-limiting fetal anomalies, and fatal genetic conditions. It also extends to neonatal and newborn loss. Although these losses don’t always receive much recognition, they are common — some estimates say that 1 in 4 women will experience a pregnancy loss in her lifetime.

Doing More for Women and Families Facing Loss

Much of Dr. Kolthoff’s responsibility at AHN revolves around prenatal investigation and diagnosis to look into the well-being of a fetus. But she says she realized that “just making a prenatal diagnosis” wasn’t enough. She wanted to better care for women and families after a diagnosis that results in a loss.

So, two years ago, she started the Perinatal Palliative Care program to provide extra palliative, hospice and grieving care and guidance. AHN also now holds perinatal loss bereavement training for employees who regularly interact with patients who experience loss. The combined seminar and group discussion includes learning about specific cases and hearing first-hand from parents who have lost a child during or shortly after pregnancy.

Recently, Dr. Kolthoff’s department also launched a pilot program for women facing a miscarriage (commonly defined as the loss of a pregnancy before the 20th week). In cases where the miscarriage can happen safely at home without any complications, women are offered the option of a take-home kit with educational material, a maxi-pad, and a collection cup.

“Having something physical they can go home with can be helpful,” Dr. Kolthoff says. “But this is also a way to acknowledge the loss, and it gives the doctor an opportunity to sit with the woman, answer her questions, and express sorrow and care.”

In the medical community at large, there is growing recognition of the importance of including some of the same practices observed with other losses. Another change involves elective cesarian sections when a baby is not expected to live. Once considered controversial, Dr. Kolthoff says the practice is now more widely accepted.

“Sometimes women request an elective C-section so they can see their baby while it’s still alive,” she explains. “This comes with risks, but as long as the woman has been counseled and informed, that’s her decision.”

Complicated Grief

At times, our culture deprives women of the experience of grief as a natural response to perinatal loss. As with other mental and behavioral health issues, there is still stigma and societal discomfort associated with reproductive loss and grieving.

“Our society still tends to separate reproductive loss from other loss,” says Dr. Kolthoff. “It is often considered a loss not worth grieving — a failed project — or as something you’ll get over quickly since it happens to many other women. That is just not the case.”

She adds that when we ask someone to “put a good face on” or “look on the bright side” after a reproductive loss, we increase the risk of having normal grieving become complicated grief (CG) — feelings of loss that are debilitating and don’t improve over time.

“There is a lot of fluidity between ‘normal grief’ and CG, and it’s extremely difficult to encapsulate what grief looks like,” Dr. Kolthoff says. She notes that perinatal grieving can include post-traumatic stress disorder (PTSD), depression, anxiety, sleep disorders, and intrusive thoughts. She says it is not uncommon for women to report feeling guilt as well.

The key point is to recognize that anyone going through any perinatal loss or the death of a newborn is at risk of experiencing grief that may require extra attention. Pre-existing mental health issues such as depression, a lack of support, and social isolation are other factors that can increase the risk.

Dr. Kolthoff adds that the AHN Women’s Behavioral Health Center is a valuable resource that she regularly integrates into her practice to help determine which patients might benefit from support provided by a counselor or therapist.

Different Ways of Grieving

Explaining that there is no obligation to choose the Perinatal Palliative Care program after a diagnosis likely to result in loss, Dr. Kolthoff emphasizes that “we let people recover in their own way — we just want them to know they have the extra support if they need it.”

Jizo statues in Japan.

Jizo statues in Japan.

Similarly, she believes it’s important to have candid conversations with her patients about different methods of grieving.

“I might ask if they have any cultural practices, or something based on family tradition, that could inform their grief,” she says. She uses the example of how families deal with miscarriage in Japan, where women receive a symbolic statue called Jizo that they memorialize.

“I’ve seen pictures where there are just thousands of statues, and women gather to dress and decorate them with shirts or scarves,” she says. “This whole process of acknowledgment hasn’t existed as much in the U.S., but that’s slowly changing.”

She explains that a practice like Jizo allows family, friends, and the broader community to recognize the miscarriage and connect in the grieving. The Jizo statue also provides something solid to hold and touch, which can be important for women who never got to hold the live baby they hoped to bring into the world.

At West Penn Hospital, staff and the Angel Heart Bereavement team reinforce recognition and connection by holding two memorials each year for parents and families who have suffered a loss: a butterfly release in June and a candlelight event in December.

“We don’t want these women and their families to feel like we’ve forgotten,” Dr. Kolthoff says. “Staff and volunteers also make check-in calls and send sympathy cards to families — that extra connection is good for everyone involved.”

“Recognition and gentleness go a long way”

While social support can be critically important to women dealing with a loss, Dr. Kolthoff sees social media as both helpful and hurtful. On the one hand, before the rise of social media and online support sites, losing a baby was an even more isolating experience.

“Now, one person may share her experience of the loss of a pregnancy online, and from there the world expands, including finding others who have gone through this,” she says.

At the same time, not everyone is comfortable, or comforted by, sharing something so personal online. And a constant stream of people sharing baby bump photos, ultrasound pictures, and gender reveal party invites can make a perinatal loss or abnormal diagnosis all the more devastating.

“Witnessing all your friends have seemingly perfect pregnancies can complicate the loss,” Dr. Kolthoff says. “Just keep in mind when you see all that social media hype around pregnancy that it really doesn’t go that way for everyone. Be sensitive as to what you post and who will see it.”

Another challenge created by social media and the Internet: Sometimes a woman sees parents proudly sharing how well their baby did despite a life-limiting condition. Unfortunately, their medical situation may not really be the same, or they may be an extremely rare exception.

“I never want to take away someone’s hope,” Dr. Kolthoff says, “but at the same time, you have to prepare them for the most likely reality.”

Preparing women, presenting the options, and providing extra care and support is clearly a true passion for Dr. Kolthoff. For people who are wondering how best to approach a friend or loved one who has experienced a perinatal loss, she says the first step is simply being present.

“Take the time to let her know you’re sorry for what has happened and that you’re willing to be there and talk if she feels alone,” she says. “Recognition and gentleness go a long way.”

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