What questions to ask about your baby’s heart surgery
Trying to pick a surgeon to perform open-heart surgery on your baby is a heavy decision. How do you decide? It feels like an impossible reality, and I lost so much sleep over it. Nevertheless, if you’re faced with this, it’s one of the most important decisions you’ll ever make.
If this is your reality, you’re not alone, and I hope this list can help you as others helped me. You want to make sure you have the right questions to ask your baby’s heart surgeon in order to make the best decision for your baby.
Why the questions?
When we were facing open-heart surgery as the only option for our baby to survive, I knew this was not a decision to be taken lightly. I spent hours and hours reading and researching, asking other heart moms, asking doctors, and more to help me make the best decision for my daughter’s care. I wanted to feel confident in that decision. And I wanted to be informed and aware of what to anticipate.
So I gathered pages and pages of questions to ask potential surgeons, doctors, and hospital staff in order to help guide my decision.
How I used them
We met, essentially interviewed, 2 pediatric cardiac surgeons while I was still pregnant with our heart warrior. We had repeat meetings after she was born and met additional surgeons as well to coordinate our daughter’s best surgical and cardiac care plan.
I didn’t ask all of the questions right away in our first meeting. In our very first surgeon meeting, I got embarrassed and bashful, I guess…who was I with no medical training to be asking these questions to a celebrated legend of a pediatric cardiothoracic surgeon? I got overwhelmed and really emotional and didn’t ask everything I wanted to.
Honestly, I thought some of the questions were unnecessary, or too assuming, maybe even disrespectful. Thankfully it didn’t take too long for me to realize, that my job as a heart mom to a newborn heart warrior who cannot speak for herself was to advocate for her.
Part of advocating was doing my due diligence in making sure we did everything in our power to feel confident in her care plan to give her the best possible outcome and chance at life.
This might not look the same for everyone. For me, that involved asking every single question that came to mind, understanding what was happening with her care, and knowing we had a voice and were part of the team.
Later down the line, I also came to realize how relevant all of these questions were. While I never verbally asked every single question included, most of the situations arose where I now understand why the question deserves a spot on this list.
Some of these questions came up in these early meetings, some during her first surgery, some later with her cardiologist, some during her second surgery, and other random times.
Eventually, over the course of her first year, we covered all of these questions either directly or indirectly. Some were extremely relevant, and others not so much. And this will vary because every single heart warrior’s journey will be different.
Customize to your situation
Some questions you may already know the answers to from the hospital’s website. Some questions may be irrelevant depending on what hospital or surgeon you’re discussing with.
Also please note, I put these together when planning for a complete AV canal defect (AVSD) repair. Most of them are general and applicable to several different open-heart surgeries, but some are AVSD-specific either by procedure or timeline. If your child needs a different surgery, you may have additional questions not included specific to their surgeries and/or procedures you want to add and ask.
Print the full list!
I created this comprehensive list of questions to ask our baby’s potential heart surgeons. These questions guided me and thankfully lead me to make an informed and confident decision about her care plan. If I can help even one overwhelmed heart parent feel more confident in their baby’s care team this will be worth it.
To access the full list of questions to ask about your baby’s heart surgery, click the button below. For ease, I put together a printer-friendly version with spacing and lines for notes.
For select sample questions keep scrolling down.
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Sample Questions
Questions to ask your baby’s heart surgeon
- How many surgeries will they require to repair their defect(s)?
- Is it best to have the repair done before or after symptoms begin?
- How many [specific CHD defect] repair surgeries have you completed? How many in the last year?
- How long does this surgery take on average?
- What method of correction do you plan to use?
- What are the most common complications with this procedure?
- Will you perform the surgery? Will residents be involved in my child’s surgery?
- Will you operate through the sternum? Where will the incision be located?
- Approximately how long will they be on heart-lung bypass?
- Will we receive updates during surgery? How?
Questions to ask about pre-op care
- What symptoms should we look out for pre-surgery that could change the surgery plan or timeline?
- Will they need to be seen here prior to surgery for any reason?
Questions to ask about post-op (inpatient) care
- How is recovery inpatient? How long in the hospital?
- How long will they be intubated post-op?
- What are common post-surgery complications?
- What do you do to help prepare parents to take their babies home from the hospital?
Questions to ask about post-op (outpatient) care
- How do we care for the incision afterward? Tummy time, bathing, etc.?
- What symptoms should we look out for post-surgery that would require doctor follow-up?
Questions to ask the hospital staff where your baby will have heart surgery
- Are there special restrictions due to Covid? RSV? Flu season?
- Is there a cardiovascular ICU?
- Are there Pediatric Cardiac Intensivists that participate in post-op care?
- Does the hospital have 24/7 in-hospital ECMO capabilities?
- What is the patient-to-RN ratio immediately after surgery?
Add more below
If you have other great questions to ask about your baby’s heart surgery that I missed, I’d love for you to write them in the comments at the end of this post. I hope in sharing this, overwhelmed new heart parents can learn and feel supported by us veteran heart parents!
