All the families – including mine – were gathered in a small conference room just down the hall from Surgical Waiting. Surgeon Albert Pacifico flipped through a handful of index cards; consulting them to refresh him memory. Pacifico was fast and he had a system; he often completed six heart operations or more in a single day.

“I will speak to you last,” he said to my parents. My mother gasped and began to cry.

“That’s not the way we handle that,” the surgeon’s assistant said, but there was no reassurance. Something was up, they could tell.

Finally it was their turn. There was scar tissue in my chest, a lot of scarring. More than had been anticipated. They had unintentionally torn it making the incision and suddenly blood was everywhere. Pacifico had used every trick he knew – and even made up a few new ones on the spot – and I had needed twenty units of blood, but things were stable at the moment. If we chose to go ahead, he would continue the operation.

It was what he didn’t say that hung in the room. If we go ahead, we could easily tear something else and it could happen again. And we may not be able to stop the bleeding this time.

Just because Daddy told him to call it off didn’t mean it would be any easier. Everything in my chest was being held together with baling wire and bubble gum; he had to make the repairs more permanent and leave the operative field in some type of order for the next surgeon, if anyone ever tried again. Although it would be a good 24 hours before I turned the corner and started getting better, I made it through.

The selection of a surgeon is the most important thing when going into heart surgery. Every surgeon is good, he or she wouldn’t be holding the knife if they weren’t. But when you are talking about operating on an infant with a heart the size of a plum and blood vessels measured in millimeters, “good” just doesn’t exist. This is working at a level that is well beyond the capacities of the average person.

So how do you pick the right surgeon? There’s a good rule of thumb that I often quote: The doctor you need does not practice in a town of 5,000 people.

That’s right – if you live in a smaller town (my hometown has less than 500 people!) you aren’t going to find the doctor that you need. You can make a quick determination just by observing the doctor on the first examination. If they are thrilled to see your child because “They are just so unusual!”… grab your kid’s arm and RUN. You’re in the wrong place. What you need is a doctor who has seen enough heart defects that they are almost boring. And those doctors work in prominent medical centers that see a lot of patients. Ask how many operations they do every year on children like yours, and the higher the number, the better. Post-operative care is just as important as the surgery itself, maybe more so.

(There’s always an exception: If you are at a hospital connected with a medical school, your physician may bring several of his students around to examine your child and learn about their bad heart. Medical students are a good thing; they may remember your child and use what they learned to save a life later in their career!)

Not only do you want a large hospital with lots of surgical experience and a surgeon who is experienced, you want the right type of surgeon. The doctor who did granny’s triple bypass is not who you are looking for. Rarely does a bypass specialist go digging around in the heart, you want a Congenital Heart Surgeon. Adults who need surgery for a Congenital Heart Defect may be surprised (and worried!) to learn that the best person to do their operation is a pediatric surgeon, but most Congenital Cardiac Surgery is performed on children.

You can’t control everything, and you may have to make some snap decisions, but following these simple rules (Major Medical Center, lots of operative experience, surgeon with lots of Congenital Heart Surgery experience) can tilt the odds in your favor.

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4 Responses to “Experience”

  1. Charity Says:

    I wholeheartedly agree! Well written. Our daughter’s second surgery was done by a renowned pediatric heart surgeon, affiliated with a med school. You wrote “What you need is a doctor who has seen enough heart defects that they are almost boring” and this is why our daughter’s cardiologist wanted her surgery done by this surgeon. And even he ended up doing something different with her valve. I know any other surgeon would have just said, forget it, and done a replacement.

  2. Jenny Says:

    I couldn’t agree more. When we met with our daughters surgeon before she born I was a bit put off by his casual demeanor regarding the whole thing. This was devastating serious stuff for me and why wasn’t he as nervous as I was? But then he said, “I’ve done thousands of these” with a wave of his hand and a smile on his face. His confidence was earned through experience, not an undeserved larger then most ego regarding his abilities. And he is as phenomenal as he expected himself to be. 🙂

  3. Melanie Palmer Says:

    When my 37-year-old husband came out of surgery after a heart transplant he had teddy bear bandages around his central line in his neck. He was worked on by the pediatric team. I hadn’t realised that it’s not only the surgeon – it’s a team of perfusionists, nurses, surgeons etc. who work on these tiny hearts and also my husband’s enormous, weak, made-over heart. I’m still in awe of what they do and the passion with which they do it!

  4. carolyn compton Says:

    I am enjoying the book “Walk on Water” by Michael Ruhlman about a team of paed heart surgeons, based at Cleveland.

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