Questions After Diagnosis

After a baby is diagnosed with hypoplastic left heart syndrome (HLHS), there are many things to consider. The following list of questions may help you prepare for visits with your health care team (e.g., obstetrician, pediatric cardiologist, cardiovascular surgeon, neonatologist).

These questions are a guide; some may not apply to your baby, others may prompt other questions. Your health care team can answer these and any other questions you have.

After the diagnosis

  • Is there any uncertainty about the diagnosis?
  • What further testing is needed after my baby is born?
  • Can my baby get treatment now, while still in utero?
  • Where else can I look for and find helpful information and support?

Decision-making

  • Do any changes need to be made to my birthing plan?
  • Will my child's mental, emotional or physical abilities be affected? Will my child be "normal?" What will be their quality of life?
  • What happens after the three planned surgeries?
  • Who are the members of the care team? What role does each person have? How do I find out information about each of them?
  • How many of the surgeries of the type my newborn needs, has this surgeon performed in the last year? How many of the subsequent surgeries? Are there other pediatric cardiologists here? How many HLHS children has the institution treated in the past two years?
  • What are the common complications of each of the surgeries at each institution?
  • What is the average length of stay after Stage 1 surgery?
  • What other services will be available for my baby?
  • Is there lodging available (e.g., Ronald McDonald House or similar lodging facility)?
  • Can I see the patient care unit where my baby will be after Stage 1 surgery? Will the baby be there until discharge?
  • What is the unit's policy for visitors? Can siblings or grandparents visit?
  • I would like to talk with parents whose baby had surgical intervention at your center. Can you connect me?
  • How are parents involved in the medical decision-making process?
  • What clinical trials are available for patients with HLHS?

Pre-op stage 1

  • When will I hold my baby?
  • Where will my baby be taken after delivery?Is it in the same building where parents stay until discharge?
  • Can I feed my baby? Can I breastfeed?
  • What are the risks of this surgery?What steps are taken to reduce these risks?

Post-op stages 1, 2 and 3

  • Did everything go as expected? Were there any complications? If yes, how will they affect my baby's condition? How will they affect future surgeries? How will the complications affect the hospitalization (e.g., number of inpatient days, any special equipment or other procedures needed)?
  • Will my baby go home with a feeding tube?
  • What steps do I need to take now to get ready for discharge (monitoring, CPR training, equipment)?
  • What specific signs and symptoms should I look for after going home after each surgery?
  • What resources do I have at home?
  • Will someone update my pediatrician?
  • Are my baby's developmental needs addressed? What will be done to maximize their development?

Pre-op stages 2 and 3

  • What are the risks of this surgery? What steps are taken to reduce these risks?
  • How long should I expect to be in the hospital? What complications could prolong the stay?
  • Will my child be in the same unit as previous surgery?

Post-op stage 2

See questions in post-op stage 1, plus:

  • What specific signs and symptoms do I need to look for when we go home?
  • How will I know when my baby is ready for Stage 3/Fontan surgery?

Pre-op stage 3

See questions in pre-op stages 1 and 2, plus:

  • What items can I bring to the unit to make my child feel comfortable?

Post-op stage 3

See questions in post-op stages 1 and 2, plus:

  • Is there anything different I need to watch for after this surgery?
  • Are there specialties or services I should seek out? Therapies?
  • How do I treat my child?
  • What do I tell my child's teachers or coaches?

For more helpful information on HLHS, visit National Pediatric Cardiology-Quality Improvement Collaborative and Sisters by Heart.