-- Who should I speak with regarding a high risk pregnancy?  
 -- Is there a certain person in the insurance company who is knowledgeable about congenital heart defects?
 -- Will I have a case manager who will follow me through my pregnancy?  Will the baby have a seperate case manager?  How do I contact them?
 -- Does my insurance plan cover either procedure (Heart Transplant or the 3-Stage Procedure)?
 -- If my insurance plan does not allow me to choose the hospital at which I would like to deliver the baby and/or have the surgery performed, how can I appeal this policy?
 -- What would be my maximum out-of-pocket cost for the year?  (Including the deductible, co-pays, coinsurance, and any other costs)  (See Important Terms for an explanation of insurance terms.)
 -- Does my plan cover any Home Health visits for the baby, if needed?
 -- Would the cost of transporting the baby to the hospital be covered, if needed?
 -- Would travel costs be reimbursed (hotel, air, mileage)?  (Often, travel costs are paid for transplants, but not the 3-stage surgeries.  There are exceptions, of course, so make sure you ask a supervisor, or someone in management who can give you a definitive answer.  You can also tell them that a transplant may be required after birth, so you need to travel to a transplant facility, just in case.  They may be able to list you under their transplant services and pay for your travel, even if you decide on the 3-stage surgeries.)
 -- Do I need to get pre-certified before entering the hospital to deliver the baby?
 -- When do we need to enroll the baby to ensure coverage?  (VERY important - make sure to follow all of your insurance company requirements to ensure coverage.)

What to ask your insurance company
Important Questions to Ask
Hypoplastic Left Heart Syndrome (HLHS) Information Page
What to ask the surgeon and hospital staff
The surgeon: 
 -- Are you board certified in pediatric cardiothoracic surgery? 
 -- How many pediatric heart surgeries do you personally perform each year?
 -- How many Norwoods (or transplants) do you personnally perform each year?
 -- How long have you been at this particular hospital?
-- Which surgical procedure would you recommend for our baby's condition? 
 -- What is the success rate we can expect for our baby's condition? (Ask for the short term survival rate after the Norwood, and the survival rates for each subsequent surgery, as well as long term - 5, 10 or 15 years in the future.)
 -- When would my baby have the surgery?
 -- How long does the surgery take?
 -- What risks are associated with this surgery?
 -- Can we donate blood for the surgery?
 -- Should we consider storing the baby's cord blood in case it can be used in the future to help with heart function?

Regarding the 3-Stage Surgeries:
 -- How many 3-Stage Procedures do you personally perform each year?
 -- How long have you been performing the 3-Stage Procedure? (At this particular hospital and elsewhere?) 
 -- For the 1st surgery, do you perform the traditional Norwood, or the Sano Shunt, and what benefits have you already seen with it, or expect to see long term?  What are the potential downfalls of this type surgery?  How long has this particular surgery been performed?
 -- For the 2nd stage surgery, do you perform the Hemi-Fontan or the Glenn?  What benefits do you believe there are to that surgery?  What downfalls might there be?
 -- For the 3rd stage surgery, do you perform the Lateral Tunnel Fontan or the External Conduit Fontan?  What are the benefits and risks of each?  At what age would this surgery be performed?  (Note:  the Lateral Tunnel Fontan can usually be done around age 1-3, while the Extracardiac Fontan is usually done at age 3-4.)
 -- If it is decided after my baby is born that he or she is not a candidate for the 3-stage procedure, can you perform a heart transplant at this hospital? 

Regarding Heart Transplants:
-- Is HLHS a criteria for receiving a heart transplant at this facility?
-- How/when would we get on the list for a donor heart?
-- What is the average wait time for a donor heart at this facility?
-- If a heart does not become available within a certain amount of time, can the Norwood be performed?
-- How much experience do you have performing Heart Transplants in newborns with HLHS?
-- What is the success rate we can expect for our baby's condition? (Ask for the short term survival rate, as well as long term - 5, 10 or 15 years in the future.)
 -- How many transplants for HLHS do you perform each year at this medical center?
 -- When would my baby have the surgery?
 -- How long does the surgery take?
 -- What risks are associated with this surgery?
 -- Would we need to stay near the hospital for a period of time after the heart transplant?  If so, for how long?
 -- What type of medications are required after surgery and how long would the child be on them?  What side effects can these medications cause?

The hospital:
 -- What is the overall success rate at this medical center for HLHS babies (3-Stage and Transplant)?
 -- Is this a dedicated Children's Hospital? Or, is there a dedicated children's unit? 
 -- Does this hospital have a pediatric cardiac intensive care unit? (one that is dedicated to children with heart defects.)
 -- Is there a dedicated unit on the floor for children with heart problems?
 -- What is the average length of stay in your hospital after each surgery? (How long in the ICU, how long on the general floor.) 

Delivering the baby:
 -- Can I have a vaginal delivery? 
 -- Can I deliver my baby in this hospital?
    If yes:
         -- How many HLHS babies are delivered here annually?
         -- When would I need to travel (if the facility is far from home) to the hospital to deliver the baby?  
         -- How does the OB staff work with the surgical staff?
         -- Who is "in charge" of the baby in the delivery room? 
         -- Can I hold my baby after delivery?  Do I need to get this approved ahead of time?
         -- Will I be able to breastfeed the baby?
     If delivery is NOT an option at this facility: 
         -- Where would I deliver the baby?
         -- When and how would the baby be transferred to this facility? 
         -- What risks (if any) are there in transporting the baby?  
         -- When would I be able to join the baby at this facility? 

Medical Staff:
 -- Do the anesthesiologists only work with congenital heart patients?
 -- Do the anesthesiologists only work with infants?  
 -- Who else will be interacting with my baby? What will their roles be in my baby's care, and how much experience do they have with HLHS?
 -- Who will be in charge of my child's care throughout the length of his/her stay?
-- What role will we have in the decision-making process during our baby's hospitalization?
 -- Who will be our contact person if we have questions or concerns while our baby is in the hospital?
-- Is Physical Therapy or Occupational Therapy available for the baby in the hospital, if needed?

After care:
 -- Will my baby require any special monitoring equipment at home?  (oxygen, feeding tube, etc.)
 -- Will my baby require any medications once we are at home? 
 -- What type of follow up care is recommended (Home Health Care, Physical and/or Occupational Therapy, Pediatric Cardiologist visits, etc.)?
 -- Can you help us choose a Pediatric Cardiologist in our area for follow up?
 -- Are there any environmental factors that we would need to eliminate in our household (smoking, pets, etc.)?

Other Hospital Services:
 -- What housing options are available? (Ronald McDonald House, hotels, etc.)
 -- What other services do you provide? (social services, financial assistance, etc.)
 -- Can you give me the names of other parents whose children were treated for HLHS at this hospital?

This web site is not intended as medical advice.  Please consult your physician with any questions you may have regarding your child's condition.

Copyright © 2001-2019 D.L. Hilton-Kamm, all rights reserved.  
Note:  Some people feel uncomfortable asking doctors about their experience and qualifications.  But, any good, ethical doctor will be happy to answer your questions openly.  You can request a phone consult or see the surgeon in person to ask these questions.  Remember, that your baby's health is at stake, and finding the best surgeon can greatly affect the outcome for your baby, so do not hesitate to ask questions and choose a surgeon that you feel comfortable with.