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Questions for Doctors

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Questions for the Medical Team

For Sam's niece, ~3mo, Kaiser Roseville, admitted with Grade 3 IVH. Surgery being recommended. Updated 2026-05-12.

Print this. Bring it. Get answers in writing or in the chart.

  1. "What is the structural or underlying diagnosis driving the surgery recommendation? What did the MRA and MRV show?" We need to know what the surgery is treating. "Nothing to do with PCD" suggests they found something — what?

  2. "Is the 40-45% mortality figure the procedural risk of the shunt itself, or the overall prognosis for her underlying condition?" VP shunt procedural mortality is normally 1-3%. A 40-45% number means something specific — clarify exactly what it refers to.

  3. "Is the shunt the complete treatment, or is there an underlying cause (vascular malformation, AVM, vein of Galen malformation, tumor) that also needs separate treatment?" If there's a malformation, a shunt alone won't stop the bleeding — it will only manage the pressure. The cause has to be treated too.

  4. "Can we get an urgent second-opinion consultation with the Pediatric Neurovascular team at UCSF Benioff or Pediatric Neurosurgery at Stanford LPCH before we consent? Can you facilitate that call today?" Specialist centers see these cases regularly. A 40-45% mortality quote demands a second look. This is a reasonable request — Kaiser can do it.

  5. "What is the actual time pressure? How many hours do we have before we must decide?" "Urgent" doesn't always mean "instant." Get the real number.

  6. "Could we place an EVD (external ventricular drain) as a temporary measure to relieve pressure while we get the second opinion? What would the risk of waiting 24-48 hours be?" EVD is a bedside procedure, much lower risk than permanent shunt, and buys time for proper diagnosis.

  7. "If we don't proceed with surgery, what specifically happens? What is the timeline of deterioration?" Forces them to articulate the actual stakes rather than a general scary number.

🩻 TIER 2 — IMAGING & DIAGNOSIS (find out today)

  1. "What did the MRA (magnetic resonance angiography) of the brain show? Has Vein of Galen Malformation been ruled out?" VOGM is THE classic cause of IVH in infants this age. MRA is the diagnostic test. If not yet done — push for it before surgery.

  2. "What did the MRV (magnetic resonance venography) show? Has cerebral sinovenous thrombosis been ruled out?" She got dehydrated (stopped fluids) — that's a CSVT trigger.

  3. "On the susceptibility-weighted (SWI/GRE) MRI sequence — is there evidence of mixed-age blood? Old + new bleeding together?" Mixed-age blood = recurrent bleeding pattern. Confirms the sentinel-bleed hypothesis (the drowsy episode 1 month ago was likely a first bleed).

  4. "Was the MRI done with contrast? Is the choroid plexus normal? Any evidence of choroid plexus papilloma or carcinoma?" Choroid plexus tumors classically present in infants with IVH + macrocephaly. Treatable surgically.

  5. "Is there post-hemorrhagic hydrocephalus present? Are daily head ultrasounds being done to track ventricle size?"

  6. "Is the bleeding actively ongoing, or has it stopped?"

🩸 TIER 3 — COAGULATION & BLEEDING WORKUP (must be complete)

  1. "What are her current PT/INR, PTT, platelets, and fibrinogen values?" Get the actual numbers, not "they're fine."

  2. "Has empiric IV vitamin K been given? What were the PT/INR values before and 4 hours after?" Cheap, harmless intervention. Diagnostic test if PT corrects rapidly.

  3. "Has PIVKA-II (des-gamma-carboxy prothrombin) been sent? This is the gold-standard test for vitamin K deficiency." Important to mention: she's been on chronic azithromycin for PCD prophylaxis. Macrolides suppress gut bacteria that synthesize vitamin K2. This is a known mechanism for breakthrough VKDB even with IM vit K at birth.

  4. "Have factor levels been drawn — Factor VIII, IX, XI, and XIII, plus vWF antigen and activity?" Specifically request XIII — FXIII deficiency causes ICH with NORMAL routine clotting labs. It will be missed unless specifically ordered.

  5. "Has D-dimer been sent? Has DIC been ruled out?"

  6. "Has a type and crossmatch been done? Is blood/FFP/cryoprecipitate ready if needed?"

🧬 TIER 4 — UNDERLYING CAUSE (the vessel question)

  1. "Mom is concerned about her vessels — the PICC failed, peripheral vein access is impossible. Has clinical genetics been consulted? Specifically request a vascular Ehlers-Danlos / connective tissue disorder workup (COL3A1 gene testing)." Vascular EDS would explain spontaneous ICH + vessel fragility + PICC failure as one diagnosis.

  2. "Has interventional radiology been called to attempt ultrasound-guided central venous access?" IR can often get access when bedside teams cannot. Arterial line alone is inadequate for resuscitation.

  3. "Has body vascular imaging (CTA or MRA of chest and abdomen) been done to map her vascular anatomy?" Given the organ-flip + access issues, anomalous venous anatomy needs to be characterized.

  4. "What is the maternal-side family history of bleeding, easy bruising, ruptured aneurysms, sudden death in young adults?" Hemophilia is X-linked (maternal side); vascular EDS is autosomal dominant. Family history shifts the differential.

🫀 TIER 5 — LATERALITY (SIT vs HETEROTAXY)

  1. "Has it been definitively confirmed whether she has situs inversus totalis (Kartagener) or heterotaxy? What did the echocardiogram and abdominal ultrasound show?" If heterotaxy: biliary atresia → cholestasis → vitamin K malabsorption is a real mechanism for breakthrough bleeding even with IM vit K at birth.

  2. "What are her LFTs, direct bilirubin, GGT, and bile acid levels?" Cholestasis screen. Critical if she has heterotaxy.

  3. "What is the status of her abdominal organ arrangement? Spleen present or absent? Intestinal rotation normal? Biliary anatomy normal?"

🚨 TIER 6 — SAFETY / PROTECTION (mandatory workup, not accusation)

  1. "Has ophthalmology done a dilated fundoscopic exam to look for retinal hemorrhages?" Standard part of any pediatric ICH workup. Don't be defensive — it's required by protocol.

  2. "Has a skeletal survey been ordered? AAP requires this for any infant under 2 with possible AHT." Same as above — protocol, not accusation. Getting it done clears it definitively.

💊 TIER 7 — MEDICATION & DOSING SAFETY

  1. "What was the exact volume of famotidine (40 mg/5 mL syrup) she received outpatient? Was the dose calculated by her weight in kg?" That syrup is adult-strength concentration (8 mg/mL). Infant dose is ~0.5 mg/kg q12h — about 0.4 mL per dose for a 6kg baby. Verify no 10× dosing error.

  2. "Should her chronic azithromycin be paused given the bleeding workup, or continued for PCD prophylaxis? What does the PCD team say?"

  3. "Is her current inpatient team in contact with her PCD pulmonologist (Stanford Dr. Carlos Milla or UCSF Benioff PCD center) about how the hemorrhage workup interacts with PCD care?"

🏥 TIER 8 — TRANSFER & CARE COORDINATION

  1. "Who is the pediatric neurosurgeon of record on her case — Dr. Kevin Chao, Dr. Sean McNatt, or someone at Kaiser Oakland? Are they seeing her in person or via telehealth?"

  2. "What is the written transfer trigger to Kaiser Oakland (the system's tertiary peds center) or to UCSF/Stanford?"

  3. "Has the CASP (Kaiser regional medical director Dr. Michele Evans) team evaluated her?"

  4. "Can we have the rest of the workup plan in writing — what tests are scheduled, what consults have been requested, what the next 48 hours look like?"

🎯 THE 5 MOST IMPORTANT QUESTIONS (if time is limited)

If they can only ask 5 things, these are it:

  1. "What did the MRA show? What is the structural diagnosis?"
  2. "Is 40-45% the procedural risk or the overall prognosis?"
  3. "Can we get an urgent second-opinion call with UCSF or Stanford neurovascular before consenting to surgery?"
  4. "Has Factor XIII been tested, and has she been given empiric IV vitamin K with before/after PT/INR?"
  5. "Has clinical genetics been consulted for vascular EDS workup?"

📝 BEFORE LEAVING ANY ROUNDS

You have the right to: - A second opinion - Time to think - Refuse non-emergent procedures until you understand them - Request transfer (EMTALA applies) - See her chart - Talk to a patient advocate (Kaiser has them — ask)