Some of these questions may be: Why do you recommend this treatment? What about aftercare? Recovery time? What to expect when I see my baby after surgery? Support after surgery? Potential risks? Survival rate? Experience of the team? What can go wrong and how often do they? How are we included in the decision-making process? How long is the hospital stay? Do you share your results publicly? And a few other questions.

I have been seeing a cardiologist at least once a year for the past 20+ years. I still have questions.

Sometimes when I walk out of the consulting rooms I think “I should have asked …….” And then I feel so stupid. Although it’s long ago my mother has told me how many questions she had before and after my open-heart surgery. So what are some of the questions to ask before pediatric open-heart surgery?

One of my best tips for you is, whatever you want to ask, WRITE IT DOWN BEFOREHAND. It does not matter if it’s on your phone on a piece of paper, napkin, scribble on your hand or a printed out questionnaire which I have available for AFIB patients. Write it down somewhere. Sometimes shock and anxiety make you forget everything.

So here are some of the questions. And ….. There is no such thing as a stupid question.

IS THERE ANY OTHER OPTION?

Surgery may be the quickest and best option, but what are the risk factors. Please explain it to me. In many cases, surgery is the only option. So far as I know with Tetralogy of Fallot it is the only option. But with everything, there are very rare exceptions as I learned when I was researching this article: How old can you get with Tetralogy of Fallot.

WHY THIS SPECIFIC TREATMENT?

With some conditions, there is more than one type of treatment or surgery. There can be different types of technics, procedures, implants, medicines or doctors involved.

HOW WILL THIS OPERATION HELP MY CHILD?

With any operation, there will be risks involved. You should know how this operation will help your child. With many pediatric open-heart surgeries it is real life-giving and changing experiences.

HOW LONG WILL MY CHILD NEED TO BE IN HOSPITAL?

Will it be a few days or could it be weeks? It will help you to plan. It gives you an idea of what to expect.

WHAT ARE THE RISKS OF SURGERY AND ANESTHESIA?

It is open-heart surgery. You must understand that there are risk factors. Many operations are performed every day all over the world but that does not mean that they are easy or risk-free.

WHAT TO EXPECT WHEN I SEE MY BABY/CHILD AFTER SURGERY.

Will my child be awake? Will there be IV’s (intravenous injection or infusion tubes) connected to him/her. Will there be other pipes and machines connected to him? Can I hold him?

ARE OUTCOMES OF YOUR SURGERIES REPORTED PUBLICLY

Does your team share their results in the public domain? In the USA it could be with the Society of Thoracic Surgeons (STS), which includes a database of 118 North American Centers and also to the IMPACT registry. Are there websites available to check these results?

HOW LONG WILL THE SURGERY TAKE?

Your surgeon will be able to give a good estimation on this question. The duration of the surgery depends on the child’s heart and type of surgery. Usually, the surgeon will meet you after the surgery. Knowing how long the surgery should be, can be good or bad for your nerve’s.

WILL MY BABY/CHILD NEED A BLOOD TRANSFUSION?

In many open-heart surgeries, a blood transfusion will be needed. It depends on what type of operation is performed and also if the surgeon takes any steps to avoid a blood transfusion. There are technics available where the blood can be “re-used” (if that is the right term for it) Does my child have to receive blood from a stranger or can the family also donate blood?

CAN YOU DRAW PICTURES?

It is not easy to grasp what is wrong with your child and with congenital heart disease, it may even be more difficult to understand. If your cardiologist can draw a picture to help you understand it, you will also understand the feedback he gives you after the operation.

DO YOU HAVE MORE THAN ONE PEDIATRIC CARDIAC SURGEON AT THIS HOSPITAL?

In an emergency, it is important to have an equally trained board-certified specialist on standby or available.

HOW EXPERIENCED IS THE TEAM?

Open-heart surgery is a team effort. How experienced are the cardiac nurses, anesthesiologist, perfusionists, board-certified pediatric cardiac intensivist and thoracic surgeons?

DOES THE HOSPITAL ALLOW ME TO STAY WITH MY CHILD AFTER SURGERY, EVEN OVERNIGHT?

Some hospitals are very strict with their visiting hours. It will be good to know what to expect after surgery. Are there private rooms for parents to stay over, or are you going to make do with sleeping in a chair?

WHAT HAPPENS IF MY CHILD GETS SICK BEFORE THE SURGERY?

During the 2 weeks before surgery, it is good to have your child as healthy as possible. Keep him/her away from people who have a cold or fever. Ask how you can keep your child healthy before surgery. Also, ask who you can contact if you have questions about your child’s health pre-operation.

HOW CAN I PREPARE FOR THE HOSPITAL STAY?

Must I bring special treats, sweets or not? What about toys, blankets or pillows that will remind him of home? Any specific clothing?

HOW LONG IS THE “NPO” TIME BEFORE SURGERY?

NPO stands for “nothing per os” or otherwise known as “nothing per mouth”. So ask the doctor precisely what this means. How long before surgery must your child not eat or drink? What about water? Usually, the patient should stop drinking clear fluids like thin juice or milk 4 hours before surgery and stop eating food 6 hours before surgery. Ask what your doctor requires of you and your child, with your child’s age in mind. Is there an NPO after surgery?

IS ANY SPECIAL CARE REQUIRED AT HOME AFTER THE SURGERY?

What about the surgical incision (wound)? If I can wash it, with what? Will there be any bandages to change? Is there any sport or other activities that my child may not take part in?

HOW INVOLVED WILL THE FAMILY BE IN THE DECISION-MAKING PROCESS.

Will the family be able to give inputs before, during or after the surgery or procedure, within boundaries? This does not mean the family is in control of the operation, but ask how involved can you be during this process?

WHAT POST SURGERY SUPPORT WILL BE AVAILABLE FOR ME AND MY FAMILY?

If I want to talk to other families who are going through or have gone through similar experience how can I? Will there be any meet-ups or support groups? Is there community resources available. What if I want to ask a question about the recovery of my child, but my follow-up appointment is a month away?

OTHER TYPES OF SUPPORT?

Is financial support available or where can I find out about it. Is mental health support needed and if so how and where will I find out about it. Mental health support must not be underestimated. With some patients, this life-threatening event must be assessed and be managed by professionals which may include psychologists and/or spiritual leaders of the patients choice.

WILL MY CHILD HAVE ANY LIMITATIONS AFTER THE SURGERY?

Is there anything my child may not do a week, month or a year after the surgery? Is there any limitation on the sports that he may take part in. Are there any limitations regarding traveling? Not too far from a hospital or not allowed to fly in an airplane immediately after the surgery? Think of any questions that may trouble you.

IF MY CHILD IS ON MEDICATION MUST I STOP IT?

The surgeon must know of all the medication your child is taking. This will also include any herbal supplements. Make special mention if your child is taking any kind of anticoagulants(blood thinners). If you must stop any medication find out precisely when your child must stop taking it.

MUST I BATHE MY CHILD THE NIGHT BEFORE SURGERY?

Some surgeons have specific requirements of how to bathe your child the night before. Ask if you must wash the chest and side areas with some special type of soap. Your surgeon will tell you if it is necessary or not.

These are just some of the questions that will get you started. Your own situation will require more specific questions. Remember to write down the questions you want to ask the staff and doctor.

I have an AFIB and heart health resource page HERE, CLICK TO ENTER.

I am not a doctor, and I do not give medical advice. I’m a person who was born with Tetralogy of Fallot. I have suffered from AFIB and during my journey experienced 8 cardioversions and an ablation.