For most of us, choosing a hospital for our child’s heart surgery is the most important decision we’ve ever had to make. The stakes are high, you’re on a roller coaster of emotions, and you’re afraid to make the wrong choice. There is SO much information on the internet, but it can be difficult to nail down what’s most important. So, here are 5 things to consider when comparing heart hospitals to bring clarity to your decision making.
1. Your Child’s Particular Diagnosis
Every surgeon has a different training background and skill set. Choosing a hospital with a surgeon who specializes in the surgery your child needs is vital. If your child has a more straightforward repair that may be pretty easy. If your child has a more rare or complex heart defect you may have fewer choices. Pro tip – you can interview your child’s surgeon before making a selection. They work for you, parents! This may not always be feasible, but with a prenatal diagnosis it’s definitely something you can consider. — Here’s my quick reference guide to a list of questions to ask your child’s surgeon.
2. Choosing a hospital based on Volume of Cases
This is a biggie. Practice makes perfect, right? This is true for anything we do in life. The best athletes, the best musicians, the best chefs practice their craft everyday. The more often a surgeon does a particular surgery, the more prepared he/she will be for potential curve balls in the operating room. Every child’s anatomy is completely unique so sometimes adjustments have to be made to the plan right there in the moment.
Choosing a hospital with more experienced surgeons will make all the difference. Now, the term “experienced” is relative. For a very complex procedure an experienced surgeon may have done few previous cases in his career. More common surgeries might be performed on a weekly or monthly basis. So, after you know the volume of cases the next question you will want to ask is, what were the outcomes? Let’s look at #3.
3. Choosing a Hospital that is transparent
Hospitals are ranked by many measures, but mainly outcome and mortality measures. Many heart hospitals publish their data openly on their website and you may see them ranked in the U.S. News and World Report. (See Project Heart’s blog on how to best interpret this report.) Look on your hospital’s website for outcome measures in pediatric cardiac surgery. If you can’t find it you can request it from your child’s doctor. If you are considering choosing a hospital does not publish these outcomes publicly, then ask them for this data.
You want to choose a surgeon that does a relatively high volume of cases but, of course, you also want a hospital that has good long term outcomes. Outcomes are a team approach. The surgery itself needs to be performed perfectly, but many other factors are involved in recovery. You want to see that their ICU has low infection rates, their nursing staff is top-notch, and they are working to prevent potential complications. Keep in mind that some hospitals will have higher mortality rates because they take care of more critical cases. So, as you look at their outcomes as a whole make sure you are also finding the outcomes of your child’s surgical repair in particular.
4. Location, Location, Location
Guys, this one was hard for me. We all know that location plays a role in this decision too. As you all know, my son has a pretty complex heart defect. We did all our research, and at the time of his birth we knew that Boston Children’s was THE place to go for the high-risk Norwood Procedure he would need just days after being born. This great hospital was far from our home in Nashville, but we would do anything to have the best possible outcome for our son.
Best of both worlds
We considered all the options and found out Vanderbilt, right in our hometown was also a great heart hospital. We later discovered that one of the surgeons at Vanderbilt was actually chief resident and practiced for several years at Boston. Bingo. I felt like I was getting a little bit of Boston right here in my hometown. Vanderbilt did a high volume of surgeries including many Norwoods, not as high as Boston, but still high enough to be very experienced. Their outcomes were statistically the same just on a slightly smaller volume of cases.
So, we decided to stay in Nashville. Tyler was able to work during the months I stayed in the hospital with Calvin and our family and friends were close by to help. It was a good decision for us.
There are other families also right here in Nashville that went to Boston, CHOP, and other hospitals around the nation for their child’s surgery and it was the right decision for them. They drive or fly for procedures like caths or surgery and receive follow up check ups at home. I even know a few families who travel 2-3 times per year for follow up care at their preferred heart hospital. You have lots of options and you get to choose what is best for your family. Doctors can make recommendations but at the end of the day, it’s your call.
Things to consider would be:
- Will you be able to make a living if your child is hospitalized for longer than expected?
- Do you have other children at home?
- Where is your support system?
Cost is not something we even want to consider when our child’s life is at stake, but it’s also part of the equation to making the best call. Traveling often or living away from home long term can be expensive. There are resources available to help (Hospitality Houses, Ronald McDonald House), you can ask your child’s hospital social worker what is available for you.
Another biggie is insurance. Is your insurance accepted or “in-network” at the hospital you want to go to? Some out-of-network plans require you to pay a percentage of bills out of pocket – and 50% co-insurance on a $500,000 hospital stay would be a burden worth considering all other options!
Calvin’s hospital stays added up to well over $1 million dollars paid by our insurance before his first birthday. Thankfully, in the state of Tennessee your child can qualify for TennCare (medicaid) if they have a hospital stay of 30 consecutive days or longer regardless of your household income. Many other states have similar plans in place for families needing chronic medical care for their child. We were very happy with the surgeon we chose at Vanderbilt, and as a bonus, almost all of Calvin’s medical care for the first 3 years of his life was FREE – thank you medicaid.
A quick Encouragement
Now you have 5 things to consider and a handy list of questions to ask your child’s potential surgeons. I want to encourage you for a moment, if you are feeling anxious about this decision (who isn’t??) that God is with you and He hears you. He is not unaware of your situation and He is not unfeeling about the outcome. He works all things for our good and His glory even when we can’t understand how in the moment. Luke 12:25 says, “Who of you by worrying can add a single hour to his life?” I have to remind myself that applies to my children too. I can’t add an hour to Calvin’s life by getting lost in worry. My advice is this: pray, learn everything you can, seek counsel from others, and make the decision that seems best for your family. Then, never look back.