Trisomy Awareness Month 2026
Build care around each person, each family, and each informed decision.
Families remember how the system treated them.
Families facing a trisomy 18 or trisomy 13 diagnosis meet the health system at some of the hardest moments of their lives: a prenatal result, a newborn evaluation, an intensive care admission, a surgical conversation. What they remember is often less about any single intervention and more about whether they were given clear information, whether their goals were heard, and whether the teams around them seemed to share one plan.
MedlinePlus Genetics reports that trisomy 18 occurs in about 1 in 5,000 live-born infants and trisomy 13 in about 1 in 16,000 newborns. Because these conditions are uncommon, most clinicians and units see them rarely. That makes reliability an organizational task. A family should not depend on whether the clinician on shift happens to have prior experience, or on which unit they reach first.
Informed decisions depend on confirmed information explained well. Families need to know what testing has confirmed, what remains uncertain, and what choices are genuinely open to them. MedlinePlus Genetics reports that only 5 to 10 percent of children with either condition live past their first year, and that figure is part of an honest conversation. It is not a substitute for understanding this child, this family, and what matters to them.
Coordination is where care most often fails. Maternal-fetal medicine, neonatology, genetics, cardiology, surgery, palliative care, social work, and primary care may all be involved, sometimes across more than one organization. Without a named coordinator and a shared record of the family’s goals, families repeat their story, receive conflicting messages, and must re-argue decisions they have already made.
SOFT, the Support Organization for Trisomy 18, 13 and Related Disorders, frames Trisomy Awareness Month 2026 around the theme “Because Love.” For health-system leaders, that theme is an operating standard: build care around each person, each family, and each informed decision, and make sure the plan holds through every transition, whether to home, to another hospital, to hospice, or into bereavement support.
Designate a named care coordinator and a shared, documented goals-of-care plan for every family with a confirmed or suspected trisomy 18 or 13 diagnosis, and review adherence quarterly.
MedlinePlus Genetics reports that trisomy 18 occurs in about 1 in 5,000 live-born infants and is more common in pregnancy.
MedlinePlus Genetics reports that trisomy 13 occurs in about 1 in 16,000 newborns.
MedlinePlus Genetics reports that 5 to 10 percent of children with trisomy 18 or trisomy 13 live past their first year.
Figures are summarized from the authoritative sources linked below. Definitions and denominators should be read with each source.
The route from diagnosis to a plan the family owns
Four steps keep care anchored to the person, the family, and their informed decisions.
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Confirm and explain
Make sure the diagnosis is confirmed, and explain what is known, what is uncertain, and what options exist in plain language and the family’s preferred language.
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Elicit family goals
Hold a structured conversation about the family’s values, hopes, and limits, and document the resulting goals where every team can see them.
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Coordinate one plan
Assign a named coordinator who convenes the involved specialties and keeps one shared plan current as circumstances and decisions change.
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Prepare for transitions
Plan ahead for birth, discharge, transfer, home care, hospice, or bereavement so the family’s goals travel with them.
Reliability rule: No team changes the direction of care for a child with trisomy 18 or 13 without first reviewing the family’s documented goals and talking with the family.
What leaders should watch
Four instruments show whether care is organized around each family.
Timely explanation
Track how quickly families receive a structured conversation after a confirmed or suspected diagnosis.
Documented goals
See whether the family’s goals are recorded where every involved team can find them.
Named coordination
Check that each family has a single, reachable point of contact across specialties.
Transition readiness
Monitor whether plans are in place before key transitions such as delivery, discharge, or transfer.
Handoffs that carry the family’s decisions
The family’s goals are only as durable as the handoffs that carry them.
From prenatal care to delivery and neonatal teams
- Share the confirmed findings and what remains uncertain.
- Transfer the documented birth plan and the family’s stated goals.
- Name who will meet the family at delivery and who coordinates afterward.
From inpatient teams to home or community care
- Send the current plan of care, medications, equipment, and goals.
- Name the coordinator and the after-hours contact for the family.
- Confirm follow-up appointments, home support, and palliative or hospice involvement where chosen.
From clinical care to bereavement support
- Notify the teams and clinicians who knew the family.
- Offer bereavement resources and peer support options the family can choose.
- Stop routine appointment reminders and outreach that no longer apply.
A handoff is complete when the receiving team confirms it understands the family’s goals, not when a note is filed.
A quarterly scorecard for family-centered trisomy care
Four questions keep leadership attention on information, goals, coordination, and transitions.
| Signal | Executive question | Accountable owner | Review cadence |
|---|---|---|---|
| Information | Do families receive a timely, structured explanation of confirmed findings and options? | Maternal-fetal medicine, neonatology, and genetics leaders | Quarterly |
| Goals | Are family goals documented and visible to every involved team? | Palliative care and clinical informatics leaders | Quarterly |
| Coordination | Does every identified family have a named coordinator who is reachable? | Care management and service line leaders | Monthly |
| Experience | Do families report that information was clear and their decisions were respected? | Patient and family experience leaders | Quarterly |
A 90-day plan
Use Trisomy Awareness Month to start one improvement cycle that families will notice.
Start by finding the families currently in your care. Map how information, goals, and decisions move between teams today. Fix the coordination gaps before writing new policy. Involve families and family advisors in reviewing what changes, and report progress to executive leadership.
Days 1–30: See the route
- Identify how families with a confirmed or suspected trisomy diagnosis are flagged across prenatal, neonatal, and pediatric services.
- Map the current path from diagnosis to documented goals and named coordination.
- Establish baselines for family meetings, documented goals, and named coordinators.
Days 31–60: Build the structure
- Adopt a standard family meeting template and a shared goals-of-care location in the record.
- Assign coordinator responsibility and after-hours contact routes.
- Agree on transition-plan expectations with palliative care, social work, and community partners.
Days 61–90: Sustain and report
- Review measures with the involved specialties and a family advisor.
- Stratify results by language, payer, and geography and assign owners for gaps.
- Publish a short progress summary to executive leadership.
Love is expressed through reliable care.
Trisomy Awareness Month and its 2026 theme, “Because Love,” are a reminder that families need clear information, respected decisions, and a plan that holds across every team. That is an operating commitment, not only a message.
Turn Trisomy Awareness Month into accountable action.
Build care around each person, each family, and each informed decision.
Leadership focus
Build care around each person, each family, and each informed decision, with one shared plan across every team and transition.
Workforce lens
Equip prenatal, neonatal, pediatric, and palliative teams with a shared family meeting approach and a single place to find documented goals.
Patient and community lens
Make sure families know who their coordinator is, how to reach the team after hours, and that their decisions will be carried forward.
Equity and access lens
Review access to family meetings, coordination, and palliative support by language, payer, and geography, and act on the gaps.
Inspect the operating sequence
Trisomy 18 and 13 are uncommon, so reliable care depends on organizational structure rather than individual experience. This quarter we will make sure every identified family has documented goals, a named coordinator, and a plan for each transition.
- 01Confirm and explain
- 02Elicit family goals
- 03Coordinate one plan
- 04Prepare for transitions
Leadership actions for this week
- Name an executive sponsor and frontline operating owner.
- Ask people using and operating the pathway where ownership becomes unclear.
- Test one representative route from first question to acknowledged next step.
- Select one barrier that can be corrected without overstating the evidence.
- Set a review date and define how completion will be verified.
Candidate measures
Define every numerator, denominator where relevant, owner, data source, exclusions, cadence, and limitation locally. These are management prompts, not external benchmarks.
- Median days from confirmed or suspected diagnosis to a documented family meeting
- Share of identified families with a current, documented goals-of-care plan
- Share of identified families with a named care coordinator documented in the record
Department readiness checklist
- The public and staff entry points match the actual approved process.
- A specific role accepts each request, referral, or escalation.
- Handoffs include acknowledgment and a visible unresolved state.
- Language, disability, digital, transportation, and trust barriers receive explicit review.
- Communications do not introduce unsupported themes, statistics, or clinical advice.
- A named leader will review what changed after the observance.
Intended audiences
- Executive and Operational Leaders
- Patient Experience and Access Leaders
Staff communication template
During Trisomy Awareness Month, our organization will review how we support families facing a trisomy 18 or 13 diagnosis. Please use the shared family meeting template and record family goals where every team can see them.
Community communication template
March is Trisomy Awareness Month, a time to recognize children and families living with trisomy conditions and to honor those who have died. Families looking for connection can learn about support organizations such as SOFT.
Measurement worksheet
- Signal
- What observable condition will show whether the route works?
- Definition
- What is included, excluded, and counted?
- Owner
- Who reviews the signal and acts on exceptions?
- Cadence
- When will leaders review it?
- Equity check
- Which differences require protected, locally appropriate review?
- Closure
- What evidence will confirm the improvement was completed?
Authoritative resources
- Trisomy Awareness Month (TAM), SOFT – Support Organization for Trisomy 18, 13 and Related Disorders
- Trisomy 18, MedlinePlus Genetics, National Library of Medicine
- Trisomy 13, MedlinePlus Genetics, National Library of Medicine
Verification note: SOFT’s Trisomy Awareness Month page states that the 2026 theme is “Because Love” and describes a March program running from an opening ceremony on March 1 to a closing ceremony on March 31, consistent with the calendar dates.