When your child is diagnosed with a congenital heart defect (CHD) that requires surgery, it can be overwhelming. The medical jargon, the risks, and the emotional toll can make it difficult to even know where to start. This guide aims to provide you with a comprehensive list of questions to ask your medical team, tailored to various types of heart surgeries.
General Questions for Any Heart Surgery
Before the Surgery
What is the Objective and Outcome of the Surgery?
- What is the goal of this surgery? Is it to improve function, alleviate symptoms, or is it lifesaving?
- What would happen if we choose to not have the surgery?
Who is the Surgical Team?
- Who will be performing the surgery, and what are their qualifications?
- Am I able to meet with the surgical team directly to ask questions?
- How many of this specific surgery have they performed at this hospital and how many do they perform annually?
- How many of this specific surgery has this surgeon performed and what is the success rate?
- What percentage of these surgeries are successful, and how do you define "success"?
- Which children’s hospital has performed the most of this type of surgery and what is their success rate?
What are the Risks and Benefits?
- What are the potential complications, and how do they weigh against the benefits?
- Is there anything about my child’s anatomy that makes this different than other surgeries you typically perform?
- How is my child’s specific anatomy being taken into account as the team prepares for this surgery?
- If surgery is being planned during cold/flu/RSV peak - are you able to hold off until the summer months for the surgery, or is this necessary to do ASAP?
What Pre-operative Tests are Required?
- Blood tests, imaging, etc. - do you have skilled techs who are good at blood draws (CHD kiddos are notorious for being a tough draw - be sure they are over hydrated 24 hours before getting blood taken)
- Are there any new technologies at this hospital, or any other children’s hospital, available like modeling software or 3D printout technologies that would increase the likelihood of success and reduce the likelihood of complications?
How Should We Prepare?
- Fasting time, medications to avoid, etc.
- Should we pull our child out of school for a set period of time beforehand?
What Should We Expect During Surgery?
- How long will the surgery take?
- Will you be providing us updates during the surgery and if yes, at what frequency?
- Will blood transfusions be necessary? If so, can you donate your own blood?
What Should We Expect Post-Surgery?
- How will my child look?
- What is the expected recovery time?
- How long will your child be in the hospital, and when can they return to normal activities including school?
- What postoperative care is required? - Medications, physical therapy, etc.
- What are the signs of complications? - When should you seek immediate medical attention post surgery?
- Are there any ways to minimize scarring?
- What are the long-term implications?
- Will there be a need for additional surgeries or long-term medications?
What Are the Long-Term Impacts of Surgery?
- How will this affect quality of life - In terms of physical activity, diet, and general wellbeing?
- What support is available - Are there counselors or support groups for both the child and the family?
- What questions would you have if your son/daughter were headed into this surgery?
- Is there anything I should be thinking about or doing to prepare that I’m not thinking about?
Specific Questions for Different Types of Heart Surgeries
Fontan Operation
- Before surgery - what are the optimal pressures you are looking for before and after surgery?
- What is the expected oxygen saturation level post surgery?
- On average - how long do your patients require chest-tubes post surgery?
- How will this surgery affect my child's exercise tolerance?
- What are the long term liver and kidney implications?
- Can you please tell me about PLE and plastic bronchitis - are these things I need to be concerned with or any indication that my child would be at a higher risk?
- Do you offer a Fontan clinic and when does follow up for liver function, neurology, etc. begin here?
- Is my child a candidate for a bi-vent repair? What are the advantages and disadvantages to repair vs. a Fontan repair?
Norwood Procedure
- What are the risks of the Norwood compared to other surgeries?
- How will this surgery affect the other ventricles and valves?
- What is the likelihood of needing additional surgeries after the Norwood?
Glenn Procedure
- How will this surgery affect my child's blood flow?
- What are the risks of clotting or arrhythmia post surgery?
- How will the Glenn prepare my child for the Fontan operation?
- Do we need to worry about headaches or other complications?
BT Shunt
- What are the risks of shunt blockage or failure?
- How often will the shunt need to be replaced or adjusted?
- How will this affect my child's growth and development?
Bi-vent Repair
- How long has this facility been performing this procedure?
- How will this surgery affect the function of both ventricles?
- What are the risks of ventricular arrhythmias post surgery?
- How does this surgery affect long term heart function?
Switch Operation
- How will this surgery affect the coronary arteries?
- What are the risks of aortic complications post surgery?
- How does this surgery affect the long term outlook for my child?
Having a child undergo any type of heart surgery is a daunting experience. Being well informed can help you make better decisions and prepare you for the journey ahead. Don't hesitate to ask your medical team any and all questions you may have; it's crucial for understanding the risks and benefits and for your peace of mind.