Pregnancy loss is always a deeply personal and often devastating experience, but for those who experience vanishing twin syndrome (VTS)—where one twin or multiple fetuses are lost during pregnancy—the loss can be uniquely isolating. Unlike a traditional miscarriage, VTS is often discovered incidentally during an ultrasound, leaving many patients to process their grief in the absence of clear guidance, emotional support, or even acknowledgment from their health care providers.
Our recent mixed-methods study, published in Twin Research and Human Genetics, examined the patient experiences of those diagnosed with VTS, analyzing their interactions with health care providers, the quality of information they received, and their overall satisfaction with their care. The findings were sobering: More than half of respondents rated their communication experience negatively, and the average satisfaction score for the amount of information received was just 3.5 out of 10.
The power and problem of language in reproductive care
One of the major issues highlighted in our study is how the language providers use to discuss VTS can shape patient experiences in profound ways. The philosophy of language teaches us that words do not merely describe reality—they construct it. The way health care providers frame a diagnosis can influence how patients understand, process, and emotionally respond to their loss.
For example, some patients were told their loss was “insignificant” or merely a “failed implantation.” Others encountered ambiguous or misleading terminology, such as being told they experienced a “vanishing twin,” even in cases where the lost fetus had been partially retained rather than fully resorbed. This lack of clarity not only causes confusion and distress but also raises ethical questions about how medical professionals should communicate pregnancy loss in a way that is both medically accurate and emotionally supportive.
A more nuanced and patient-centered approach is needed—one that respects the unique nature of each pregnancy loss while ensuring clear and compassionate communication.
The need for clinical resources and standardized guidelines
Despite the growing prevalence of multiple pregnancies, particularly due to assisted reproductive technologies, clinical guidelines surrounding VTS remain vague, leading to inconsistent diagnoses and inadequate patient counseling. Nearly 43 percent of patients in our study were not informed about chorionicity, a critical factor in determining risks to the surviving fetus. Many reported being dismissed, confused, or left with unanswered questions about their pregnancy and the fate of their vanished twin.
A promising model for addressing these gaps in patient care comes from the Butterfly Project, a clinical initiative that provides structured guidelines and support resources for families experiencing the loss of a twin. The project, led by Dr. Nicholas Embleton and colleagues, recognizes the need for formalized language and bereavement care in neonatal and perinatal loss. It provides clinical training, educational materials, and standardized protocols aimed at improving provider communication while offering parents the emotional validation and resources they need to grieve.
By adapting resources like those developed in the Butterfly Project, health care institutions can move toward a more standardized, compassionate approach to VTS care—one that acknowledges both the medical realities and emotional complexities of losing a twin or multiple.
Why this matters for providers
Many health care providers are not adequately trained to discuss VTS, leaving them unsure of how to approach it. Without a clear standard of care, the burden often falls on obstetricians, maternal-fetal medicine specialists, and even emergency room physicians to relay the diagnosis. The inconsistency in how VTS is communicated can affect maternal mental health, increase anxiety, and leave families without appropriate resources to cope.
Providers can improve care by:
- Normalizing discussions about chorionicity early in pregnancy, especially for those at risk of multifetal loss.
- Acknowledging the emotional impact of VTS, even when a healthy fetus remains.
- Providing written materials and resources, including those from the Butterfly Project, for parents to reference after the diagnosis.
- Referring patients to support groups and mental health professionals when needed.
Moving toward better care
Pregnancy loss at any stage deserves compassionate, evidence-based care, and VTS should be no exception. While research on patient experiences with VTS is still emerging, our study highlights a crucial gap in provider communication that needs urgent attention. By improving education, updating protocols, and ensuring that patients receive both medical and emotional support, we can transform the way VTS is managed in clinical practice.
Ultimately, how we communicate about loss shapes the patient experience. For those who endure the silent grief of VTS, a provider’s words can make all the difference.
Nichole Cubbage is a biomedical researcher.
