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QUESTIONS FOR THE MEDICAL TEAM

~3-month-old • Grade 3 IVH • Kaiser Roseville • 2026-05-12
40-45% mortality is NOT normal for a VP shunt (standard is 1-3%). That number is the underlying condition prognosis, not procedure risk. Do not consent to surgery without a second opinion from UCSF Benioff or Stanford LPCH neurovascular team.
★ Top 5 — Ask These First
  1. 1What did the MRA show? What is the structural diagnosis driving the surgery?
  2. 2Is 40-45% the procedural risk of the shunt, or the overall prognosis for her condition?
  3. 3Can we get an urgent second-opinion call with UCSF Benioff or Stanford LPCH neurovascular before consenting?
  4. 4Has Factor XIII been tested, and was empiric IV vitamin K given with before/after PT/INR?
  5. 5Has clinical genetics been consulted for vascular EDS workup (COL3A1)?

1Pre-Surgery Consent

  • ▸What is underlying cause? Just hydrocephalus or also a vascular malformation?
  • ▸Is the shunt the complete treatment, or does the cause need separate treatment?
  • ▸Can EVD (temporary drain) buy us 24-48 hrs for second opinion?
  • ▸How many hours until we must decide?
  • ▸What happens if we wait?

2Imaging & Diagnosis

  • ▸MRA done? Vein of Galen Malformation ruled out?
  • ▸MRV done? Sinovenous thrombosis ruled out?
  • ▸SWI/GRE — is there old + new blood (mixed-age)?
  • ▸Choroid plexus normal on contrast MRI?
  • ▸Daily head ultrasounds tracking ventricles?

3Coagulation Labs

  • ▸Actual numbers: PT/INR, PTT, platelets, fibrinogen?
  • ▸Empiric IV vit K given? PT/INR before & 4hr after?
  • ▸PIVKA-II sent? (gold-standard vit K test)
  • ▸Factor VIII, IX, XI, XIII, vWF tested?
  • ▸(FXIII is normal on routine coag — must order specifically)

4Vessel Fragility / Genetics

  • ▸Mom thinks it's her vessels — PICC failed, no peripheral access
  • ▸Clinical genetics consulted? Vascular EDS (COL3A1) workup?
  • ▸Interventional radiology for US-guided central access?
  • ▸Body CTA/MRA to map vascular anatomy?

5Laterality (SIT vs Heterotaxy)

  • ▸Situs inversus totalis (benign) OR heterotaxy (high-risk)?
  • ▸Echo + abdominal ultrasound results?
  • ▸LFTs, direct bilirubin, GGT, bile acids?
  • ▸Heterotaxy + cholestasis → vit K malabsorption → bleeding

6Safety Workup (Protocol, Not Accusation)

  • ▸Ophthalmology dilated fundoscopic exam done (retinal heme)?
  • ▸Skeletal survey ordered? (AAP requires for infants <2 with ICH)
  • ▸These are protocol — getting them done CLEARS the question

7Medication Safety

  • ▸Famotidine 40mg/5mL = adult strength (8mg/mL)
  • ▸Infant dose ~0.4mL — verify no 10× error
  • ▸Should azithromycin pause? Talk to PCD pulm?

8Transfer & Coordination

  • ▸Peds neurosurg of record? Chao, McNatt, or Oakland?
  • ▸Seen in person or telehealth?
  • ▸Written transfer trigger to Kaiser Oakland?
  • ▸Written 48-hour care plan?

Your Rights as the Family

✓Right to a second opinion
✓Right to time to think
✓Refuse non-emergent procedures
✓Request transfer (EMTALA)
✓Access her medical chart
✓Talk to a Kaiser patient advocate
Print this. Bring it bedside. Get answers in writing. Updated 2026-05-12