His Name Was Benjamin

Stacey Fletcher was sitting in her hospital room waiting to be discharged just 24 hours after giving birth to her stillborn son. His name was Benjamin. Fletcher could hear the cries of other babies on the floor and laughter in the hallways, but her room was quiet.

Fletcher just wanted to go home. She had said hello and goodbye to Benjamin in a very short time, and she and her husband had to find a way to console their three little boys and help them process the fact that there would be no baby coming home for Christmas.

The nurse reviewed the release paperwork with Fletcher, checking the list of care suggestions they share with all mothers, such as sitz baths, exercise restrictions, and pain-reliever dosages. 

Fletcher knew the drill, but she listened as well as she could, her bags packed beside her to go home without her son. 

Fletcher was already in labor when she and her husband learned that Benjamin had died. The shocking discovery also meant that she would need to deliver with an increased chance of hemorrhage. While in the throes of a 31-hour labor, Fletcher could do little, as her husband was pulled out of the room multiple times to sign the death certificate for their son and paperwork about the risks to his wife.

Back in the discharge room, the nurse turned the page. Up next was the sheet on breastfeeding.

While Fletcher looked on, the nurse took a black Sharpie marker and drew an X across the paper. There would be no need to talk to this mother about breastfeeding Benjamin. Benjamin was gone.

Many clinics provide care for women who are pregnant following stillbirth, but without the specially trained staff and additional protocols to improve patient experience and reduce risk of recurrent adverse outcomes. The Rainbow Clinic designation affirms that a clinic provides holistic, sensitive, evidence-based quality care with specially trained staff for people who are pregnant after a stillbirth or neonatal death, increasing patient satisfaction and improving birth outcomes in these higher-risk pregnancies. 

In 2013, Tommy’s, a London-based charity that supports women and research around pregnancy, founded the Rainbow Clinic in Manchester with the goal of providing research and specialized care to women who experience a pregnancy after stillbirth or other causes of fetal or infant death.

The Rainbow Clinics were initially UK-based and UK-focused, with no intention of going global. But there was so much interest in the work the clinics were doing that Joanne Stone, MD, MS, at Mt Sinai partnered with Alex Heazell, MBChB (Hons), PhD, MRCOG, at U Manchester to launch the first US Rainbow Clinic several years ago. Uma Reddy, MD, MPH, at Columbia followed suit last year. University of Utah Health’s Pregnancy After Loss program, which launched in May 2024 and has already received major recognition as part of the University of Utah Stillbirth Center for Excellence, which launched in October 2024, is the latest program to receive a Rainbow Clinic designation.

These three US clinics will lead the US adaptation of the Rainbow Clinic model in the country as the “US Pregnancy After Loss Network” with the support of parent-led organizations, The Natalie Foundation and the Iris Fund. According to Susannah Leisher, PhD, a stillbirth epidemiologist and co-director of the University of Utah Stillbirth Center of Excellence, another six US-based clinics are expected to receive the Rainbow Clinic designation by the end of 2025.

The work of these clinics—providing health-care worker training, giving support and prenatal care to mothers, and contributing to research on the causes of stillbirth—is critical. There are more stillbirths every year in the US than there are deaths of children ages 1 to 14—from all causes.

“They’re not even born alive,” says Leisher. “They’re not even making it across the starting line.”

The loss of the babies is heartbreaking enough, but the women who have experienced a stillbirth or other pregnancy loss go on to have an increased risk of depression, PTSD, anxiety, and other mental health issues.

“Mental health is at the heart and center of pregnancy loss and stillbirth,” says Rana Jawish, MD, assistant professor in the Department of Psychiatry at the Huntsman Mental Health Institute of University of Utah Health. “Up to 70% of women who have experienced pregnancy loss have had symptoms of anxiety. Intrusive memories, flashbacks, and fear meet the criteria of post-traumatic stress disorder.”

Screening and treating these complications, along with providing medical care and counseling through subsequent pregnancies, are at the heart of U of U Health’s program. Leisher is undoubtedly excited about the clinic receiving the designation of Rainbow Clinic, but she also knows U of U Health has been doing this work for a long time with doctors like Bob Silver, MD, chair of the Department of Obstetrics & Gynecology in the Spencer Fox Eccles School of Medicine—and they would do it even without the affiliation with Rainbow Clinics. For over 40 years, the University of Utah has been home to the most productive stillbirth research program in the country, with one of the few clinical programs dedicated to pregnancy loss in the US. Even so, the center, together with the new clinic, has identified several 10-year goals to aim for in collaboration with research, clinical, and parent group partners, including cutting the rate of stillbirth in the US by half (the US ranks 152 out of 187 countries for reducing stillbirth rates); cutting racial disparities in stillbirth rates in half (stillbirth in the US is far more common among Black, Pacific Islander, and Native American families than it is among white families); and doubling the number of US families receiving bereavement support after a baby’s death.

For Leisher, this work is also very personal. In 1999, she experienced her own loss. Her baby was stillborn at 38½ weeks—and her pregnancy up to that point had been considered healthy.

“A baby dying is the worst scenario,” says Leisher. “And friends, family, clinicians—people find it hard to know what to say.”

In the US, Leisher says, even health care workers struggle to find words when stillbirth happens.

She compares it to her experience living in Australia. During prenatal visits with her fourth child, her doctor didn’t have the warmest bedside manner. But when asking about Leisher’s history, the doctor asked about her stillborn child—and called him by name.

“Stillbirth is one of the saddest and most devastating pregnancy complications, and it’s far too common,” says Silver. “Even though the US has considerable resources, our rate of stillbirth is much higher than that of other similar countries. This clinic is part of an effort to provide better treatment and improve the outcomes in subsequent pregnancies.”

That small gesture was enormous for Leisher, who points out that medical forms she had filled out in the US asked about miscarriages and live births, but not about the full-term deliveries of infants who had died.

“She could have driven over me with a truck,” says Leisher, “and I would’ve still been happy just because she used his name.”

His name was Wilder.  

It’s important to Leisher and to Fletcher, who also works with the program as a patient advocate and clinical trainer, to be there for the women who have experienced the death of a child. Many who have not experienced loss lean on words like depression, shock, and complex PTSD to explain what happens to these women after a baby’s death, but Leisher and Fletcher put those diagnoses in real-life terms for moms having another child after loss. 

“Something as simple and as quick as an ultrasound or a heart check is devastating for patients trying to drive themselves to the clinic. Women will sit in the parking lot, trying to come up with the nerve to walk in, assuming the worst,” says Leisher. “That is the beauty of this care: to provide resources for them and arrange clinical care around these needs. That means immediate heart checks, extra heart checks, extra ultrasounds, extra appointments, extra time with doctors and nurses, follow-up care.” The Pregnancy After Loss Program focuses not only on the mother’s physical health, but also on mental health and peer support. These three aspects provide a unique clinical experience to a patient population that needs added compassion and care. Mothers who have delivered a stillborn child, for example, might have an immediate consultation with Silver to go over test results and autopsy results to try to find answers.

“That’s a huge step in the process to begin healing and move forward,” says Fletcher. “It’s one of the most golden things we offer: to be able to speak to someone immediately for answers and also to have a consultation prior to a subsequent pregnancy to make sure the patient is prepared—not only physically, but emotionally—and to ensure she has a support system in place.” 

That support wasn’t there for Leisher. When she delivered Wilder, his eyes were closed. In her state of shock, she didn’t think to open them, so today, 25 years later, she doesn’t know the color of her son’s eyes. She also doesn’t know why he died, despite having an autopsy.

“It’s one of the most golden things we offer: to be able to speak to someone immediately for answers and also to have a consultation prior to a subsequent pregnancy to make sure the patient is prepared—not only physically, but emotionally—and to ensure she has a support system in place.”

Fletcher chose not to have an autopsy for Benjamin. Doctors suspected his cause of death might have been the result of a genetic issue like Down syndrome or Turners syndrome. “It’s one of the biggest regrets of my life,” she says of her decision. In reality, a simple blood test or placental exam could have given answers as well. Today, Fletcher is an advocate to help other stillbirth families understand the importance of an autopsy, not only to find answers to cause of death but also to provide closure and the ability to move forward in grief and healing.

For these women, another powerful aspect of the work they do is in the bilateral agreements the program has with University of Utah research teams that allow them to try to determine why children are dying in the first place. Fletcher, then, can focus on training health care workers at the U on how to have these conversations and why autopsy is not only useful for research, but healing for the families themselves.

The Pregnancy After Loss Program means many things to many people: it’s research, it’s community, it’s clinical and mental health care. To Fletcher and Leisher, it means women won’t watch their partners get pulled from the room while they labor to deliver a baby they know is gone. It means health care workers will be prepared to have difficult but important conversations in tragic moments. It means women will know that their care team is ready to assist them—physically and emotionally—through another pregnancy. It means women who experience loss will not have to watch a nurse cross out “breastfeeding tips” in their discharge papers. It means that more mothers will opt for autopsy for the benefit of other mothers and their babies.

It means we will say their babies’ names