Monochorionic diamniotic (MCDA) twin pregnancies come with more scans, more risk, and more decisions to make in very little time. Parents are expected to absorb complex medical information, navigate unfamiliar terminology, and act quickly, often under pressure. When care teams do not meet that need for clarity and support, parents do what any reasonable person would do.

They go looking for answers.

In 2024, we published a study in Midwifery that explored how parents experiencing high-risk MCDA pregnancies used social media during their care. Over 600 people responded. Nearly half brought information from online communities into their clinical appointments. And in more than 70 percent of those cases, health care professionals considered that information in shaping care decisions.

This is not something that is out of the ordinary. It is a sign of how health care is already changing.

Parents are not waiting to be handed carefully packaged summaries. They are actively researching. They are asking questions. They are sharing knowledge. And increasingly, they are showing up ready to take part in their own care, not just follow orders.

These are not fringe patients. They are the majority.

Millennials, now in their late twenties to early forties, are the largest generation alive today. They are the ones having babies. Gen Z is not far behind. These generations are digital natives. They have grown up with access to unlimited information. They do not wait to be told what to do. They look things up. They cross-check with peers. They expect to be taken seriously when they walk into a clinic armed with knowledge.

They are not trying to replace clinicians. They are trying to work with them.

They show up prepared. They ask direct questions. They want straight answers. And they expect their care team to treat them as collaborators.

The old model, where clinicians make the decisions and patients are expected to quietly comply, no longer fits. It does not serve the people actually living through these pregnancies.

These parents are not asking for special treatment. They are asking to be taken seriously as an active part of their own care team. After all, everyone in the room wants the same thing: healthy, surviving babies and parents.

When parents turn to social media, they are not rejecting clinical care. They are filling the gaps left by it. Peer communities help explain what to expect from a fetal medicine referral, what to pack for a possible hospital transfer, or how to mentally prepare for laser surgery. They break down medical terms, share example questions to ask at appointments, and often walk parents through what a diagnosis might mean day to day. It is not just information. It is orientation.

These groups also offer something many families cannot find in a ten-minute consult: emotional support, lived experience, and the kind of perspective that turns medical language into real-life choices.

Clinicians often do not realize what they have missed. Parents frequently leave appointments unsure about what they just heard. They may not fully understand chorionicity or the timeline of risks. They may have questions about TTTS or TAPS that go unanswered because they were too overwhelmed to ask. And when those questions come later, they rarely get a second chance to ask them.

MCDA pregnancies do not wait. Conditions can change between scans. Diagnoses can go from suspected to urgent within days. Parents know they are on a clock, even if no one says it out loud. And the emotional weight of knowing something could go wrong, but not knowing what or when, is immense. In that space, connection matters. Understanding matters. Communication matters.

Misinformation exists, of course. But so does lived experience. And so does well-sourced, curated, medically aligned information being shared by patients who have done their homework. Our research showed that when parents brought that information into appointments, clinicians often acted on it. Not because they had to, but because it was useful.

That is not a breakdown of clinical care. That is a moment of shared decision-making done right.

But those moments are still the exception. Too often, parents are dismissed when they mention something they read in a peer group. Their efforts to prepare are seen as confrontational. Their knowledge is viewed as a challenge to authority. That reaction breaks trust. And it is completely unnecessary.

Clinicians who meet informed parents with openness are not giving up control. They are building trust. They are making better decisions, together. And they are aligning care with the lived reality of the people it is supposed to serve.

If you are a provider working with MCDA pregnancies, ask your patients what they have learned. Invite them to bring in questions. Validate the research they are doing. When patients are informed and engaged, they are not undermining you. They are doing exactly what high-risk medicine needs most: showing up, paying attention, and fighting for the best outcome.

This is not a trend. It is the present. Patients are already showing up informed. They are already shaping care. The question is whether their providers will recognize that as a strength and start working with them instead of around them.

Stephanie Ernst is a patient advocate.