Once you're home, knowing which symptoms need attention helps you act with confidence. This article lists warning signs — but always follow the specific instructions your team gives you, which take priority.
Call your child's surgical team promptly if you notice
- Fever or signs of illness
- Increasing redness around the incision
- Drainage from the incision
- Clear fluid leakage from the incision or, after nasal repair, clear fluid from the nose (a possible CSF leak)
- Worsening swelling
- Bleeding that doesn't stop as instructed
- Poor feeding or refusing to eat
- Repeated vomiting
- Unusual sleepiness or difficulty waking
- Increased irritability that's hard to console
- A bulging soft spot or rapidly increasing head size
- Any symptom your discharge instructions specifically list as urgent
Seek urgent or emergency care if your child has
- Difficulty breathing
- Repeated vomiting
- Seizure-like activity
- Is very difficult to wake or unusually unresponsive
- Seems seriously ill
When in doubt about whether something is an emergency, err on the side of seeking care.
Why these signs matter
Many of these symptoms point to problems that are very treatable when caught early — infection, a CSF leak, or developing hydrocephalus among them. Vomiting, unusual sleepiness, a bulging soft spot, or rapid head growth can be signs of rising pressure and deserve prompt evaluation. Clear fluid leakage can signal a CSF leak, which needs timely attention because of infection risk.
Trust your instincts
You know your child best. If something feels wrong even when you can't name it, it's always okay to call. Care teams would far rather hear from you than have you wait and worry.
Keep your instructions handy
Post your discharge instructions and your team's contact number somewhere easy to find. In a stressful moment, having the right number and the list of warning signs at hand makes a real difference.
This article is about post-surgical warning signs. If your child is showing emergency symptoms, seek care right away rather than waiting.
Sources
- CHOP — Encephalocele / post-operative warning signs
- Cleveland Clinic — Encephalocele
- Boston Children's Hospital — Encephalocele
- NINDS / NIH — Encephalocele