First, I am a practicing pediatric cardiologist at Miami Children’s Hospital. I am currently directing the cardiac intensive care program here. I’ve directed a cardiac intensive care program since 1989. I suspect I have directed a cardiac intensive care program longer than just about anyone who’s currently doing it. At best, I can speak from experience. At worse, it just makes me old! What I say is my opinion and my opinion only. However, what I will suggest to all of you is what I would suggest to any family member that might be in the same position as you. There might be some physicians out there that disagree, Or more likely, I’ll say things that they believe but won’t say publicly. So just think of me as your personal, inside source. Feel free to email me if you have a question at Anthony.firstname.lastname@example.org. I’m more than willing to tell you who I think is the best at what we do.
If you are reading this, you are unlucky enough to be the parent of a child born or soon to be born with congenital heart disease. Or you just might have someone close to you in that unfortunate position. Here’s my message, don’t despair, don’t give up, it can and usually does get much better. And you have the potential to really influence the outcome in a positive way.
It was probably just a short time ago when you felt that you didn’t have a care in the world, and everything in life was as great as it could ever be. Perhaps you were pregnant, with marvelous expectations of the new life you were about to deliver to the world. A child who would be strong and smart and kind. A child who would go on to do great things.
The devastating news that your child has congenital heart disease can come in many ways. Perhaps your child had already been born and was apparently well in the newborn nursery. Occasionally your baby has been whisked away to some other hospital before you had a chance to kiss him/her goodbye. Sometimes it’s just a routine trip to the pediatrician for a “well-baby visit”. And then your whole world came tumbling down. Congenital heart disease can present in a number of ways, none of them are anything but horrific for a family. Even lesions that your cardiologist insists aren’t a big problem to fix mean years of unplanned visits to the office at best and “simple” heart surgery at worse. Simple heart surgery? It’s catastrophic to learn that any child needs to have any type of heart surgery, and there’s nothing simple about any of this, at least to a parent.
When I was in college (a Jesuit school at that) I learned the definition of despair was to be put in a position where you feel like you have no influence on the outcome. I am certain that this is exactly how every parent feels after learning their child was born with heart disease. I mean we were all taught, count the toes, count the fingers, all there so all good, right? Wrong! Who told us we needed to count the heart chambers?
But today, the news for children with congenital heart disease is better than it has ever been and the advances are occurring at a breath taking pace. The unfortunate part of this is that it’s often up to the parents to make sure that their child is getting the very best and most up to date care. Today, there are about 120 centers in the United States that perform congenital heart surgery and most will do it very, very well. In 1988, I was lucky enough to be in Philadelphia and if you had a child with HLHS, it was about the only place in the world where surgery for that problem was even offered. Babies came from around the world in hopes of saving their lives. In 2011, there are dozens of centers in the United States who have results that are now superior to the results we had in Philadelphia by Dr. Norwood himself. That’s amazing news. Back then, we could not be sure that the majority of these children who survived their surgeries would not grow up and become “cardiac cripples.” Every time a child comes back years after his/her surgery and looks great we take it for granted they are supposed to look like that. Twenty years ago we had no idea. As cardiologists all we could do was hope. We’ve now learned that these babies can grow up and lead very productive lives. They are in every way the blessing we believed they would be.
So when you’ve learned your child has congenital heart disease, what do you do? First, take a deep breath. Get the details. Listen. The more information you have, the better the chance you’ll make an informed decision. I will make a sports analogy here; major league baseball teams all have amazing athletes. They are the best of the best in the world. But all major league teams are not the same. It’s just human nature, we are all not created equally and some of us are better than others. Yes, weak teams will win games occasionally, but not as often as The Yankees, Red Sox or Phillies. Not all heart centers are created equally either. If you want to increase your odds of winning, go with the best.
When your baby is born with congenital heart disease
Sometimes things seem quite emergent and decisions need to be made rapidly. In actuality, there aren’t many problems (even serious ones like HLHS) where you don’t have the opportunity to take your time to do your homework and make the right decision. Usually most babies with heart disease are stable if medicines like prostaglandin E1 are used. There are some rare occasions where cardiologists need to act fast, but this is only in a minority of cases.
OK, first question to your doctors, how many of these cases do you see, and how many of these procedures have they done here? How many of these procedures has this particular cardiologist or surgeon done themselves? What are the outcomes for your doctor in this program for this problem? Don’t let them skirt the issue. Demand answers. Even in the very best centers, there will be the physicians with less experience, like those out of training. If you want to increase your baby’s odds, you need to ask these questions. Are there people here with more experience? Are there centers with more experience? Some metropolitan areas may have a number of congenital heart centers. They are NOT all created equally. You can be at a great medical center, but congenital heart surgery may be one of their weaker specialties. A great center might be down the street or perhaps an hour away. You won’t know unless you ask. I worked in New York City for almost a decade; there were about 7 centers performing congenital heart surgery. You could have, by chance, ended up in any one of these. But I can tell you that your child’s likelihood of having a successful outcome was greatly enhanced if you were in one of the top 3.
If you have no other data available, then the total volume of congenital heart surgery for a center and for a surgeon, and the number of these particular types of cases they have done, are probably the best indicators of excellence you can have. If you don’t have time for more extensive research, most of the time the volume data will lead you in the right direction. In all human endeavors, human factors play a huge role in surgical success - experience counts. Are there a number of surgeries a center needs to do to be great? Some reports suggest 300 cases per year. The Society of Thoracic Surgery considers programs that perform 200 open heart cases a year to be large. In general you want to be there, especially if the problem is either rare or complex. So ask, is this the largest program in the region? Now there are some great congenital heart surgical centers that perform smaller number surgeries than the numbers I’ve presented. I just personally believe the odds favor the bigger ones. One final thought, I suppose you can be too large. McDonald's makes the most burgers in the world, but probably not the best. Be sure you don’t feel like you’re in a factory or your baby is just a number (or your child is not just a referred to as a disease-“the hypoplast in bed two”).
Ok, so we established that experience counts (that coming from an old guy)! What else matters? The overall quality of the hospital or medical center is important. You want to know that everything matters in that center. From the quality of the surgeon to the center’s obsession with cleanliness. Ok, quick check. Look at the floors. Are they as clean as you like? If not, I suspect that hospital is slacking in other areas as well. Great hospitals are sparkling clean. I promise. A great center will have great sub-specialty doctors. Great centers have leaders in their field. If you Google your doctors, do scholarly articles come up? Not all great medical centers have great congenital heart programs, but it is impossible to have a great congenital heart program in any center that isn’t great.
How about the congenital heart program. Do they have all the pieces? All programs will have echo, but do they have dedicated echo physicians who have trained in noninvasive imaging? How about cardiac catheterization? How about electrophysiology or MRI? Do they have a dedicated cardiac ICU program? Will your child be cared for by physicians and nurses who care for asthmatics and diabetics and patients with pneumonia or will he/she be cared for by specialists in cardiac ICU?
Of course, so much of this comes down to who your surgeon is. I guess it’s the single most important factor. How do you know he’s the right one? Experience counts, what are his numbers? How many years has he done these operations? Where did he train? Was it one of the best congenital heart centers (say top 20 US News and World Report)? Most importantly, when you meet him, do you trust him? Does he look you in the eye? Does he have time for you? Is he annoyed when you ask questions? Is he annoyed if you ask for a second opinion (all great physicians are never put off by asking for a second opinion-it’s a big red flag if they are, they probably lack confidence).
OK, after 20 years of this, I could go on for ever. So I’ll summarize.
Do your homework. There are great sites available that should help steer you in the right direction. Two of these include:
But don’t believe everything you read on the internet. There’s nothing that prevents people from stretching the truth a bit on the internet.
Ask questions. Lots. If the explanation doesn’t make sense ask again. If you still don’t understand, it’s not you, it’s the person explaining it to you. Red flag!
If you have no other data, go to a center with more experience, one that does more surgery. Ask if there is one close or a center of excellence for your baby’s particular problem in the US.
Make sure you are in a comprehensive congenital heart center that has all the specialties covered, and make sure they have more that one of each (what happens if you need a cath and the cath guy is on vacation)?
Dedicated cardiac ICU, dedicated cath lab. Insist.
Know that you have all the rights. It is your child, not the hospital’s. You can advocate getting your child transferred to another center if you wish.
So that’s it for now. Good luck to all of you. You’re already on the right track. That’s how you found this web page. Continue to follow your instincts; they will lead you in the right direction. Oh yeah, ASK A LOT OF QUESTIONS.
Anthony Rossi, MD
Director, Cardiac Intensive Care Program
Miami Children's Hospital