When you're frightened, it's hard to think of questions in the moment. Keep this list with you, and add your own.
Questions about the diagnosis and imaging
- Where exactly is the encephalocele located?
- How large is the opening and the sac?
- Does the sac contain only fluid and membranes, or also brain tissue? How much?
- How has the rest of the brain formed on MRI?
- Are there any other findings, like hydrocephalus or other anomalies?
- Do you recommend additional imaging, and when?
Questions about cause and testing
- Could this be part of a genetic syndrome?
- Do you recommend genetic testing or counseling? What kind?
- What might the results change about the plan?
Questions about outlook
- Based on what you can see now, what is the range of possible outcomes?
- What are the biggest factors that will determine my child's outlook?
- What can't you know yet, and when might you know more?
Questions about delivery
- Where should I deliver, and why?
- Does the encephalocele change how or when I should deliver?
- Who will be present, and what will happen right after birth?
Questions about treatment
- Will my baby need surgery, and roughly when?
- Which specialists will be involved?
- What does the surgery involve at a high level?
- What follow-up care is likely?
Questions about support
- Who is my point of contact between appointments?
- Can you connect me with counseling or a social worker?
- Are there parent groups or organizations you recommend?
A note on second opinions
Because encephalocele is rare, it's reasonable to ask whether a second opinion at a high-volume craniofacial/neurosurgical center would be helpful. Good teams welcome this.
Sources
- CHOP — Encephalocele
- Children's Wisconsin (Fetal Concerns Center) — Encephalocele
- Nationwide Children's Hospital — Encephalocele
- NORD — Encephalocele