Crazy Heart Mama

I’m a little fired up this Friday morning. This blog has been weighing heavy on my heart, and last night I read yet another instance of a child receiving horrific care at the hands of people who have no business fixing babies’ hearts. It’s so hard for parents to recognize mediocre care when they’ve never had excellent care, and I find that very frustrating. So here’s what I have to say on this subject:

Not all doctors are created equal. Not all heart surgeons are created equal. Not all heart programs are created equal. And not all children’s hospitals are created equal. I would think this would be a pretty evident observation, but I am constantly astounded by the sheer number of people who choose to take their children to lesser facilities because of convenience, and they feel that a heart surgeon is a heart surgeon is a heart surgeon. In medical school, there is a top of the class and a bottom of the class. Most pediatric heart surgeons were probably at the top of their class, but that doesn’t necessarily mean that one is just as good as another. When it’s a matter of life and death–and it’s always a matter of life and death when you’re dealing with congenital heart defects–convenience, in my opinion, should never be a factor.

First off, when choosing a children’s hospital, you want a hospital that is associated with a teaching facility. Is the hospital partnered with a medical school? That is the kind of facility you want for your child. There are no good children’s hospitals that are not associated with a teaching partner.

Let me repeat that…There are no good children’s hospitals that are not associated with a teaching partner. If you don’t believe me, read U.S. News and World Reports. Every single one of the top-ranked children’s hospitals in the country are associated with a medical school. End of story. Period. Boston Children’s Hospital ranked No. 1 in the country? Their teaching partner is Harvard Medical School. Texas Children’s Hospital ranked No. 2 in the country? Their teaching partner is Baylor Medical School. Children’s Hospital of Philadelphia ranked No. 3 in the country? Their teaching partner is University of Pennsylvania. I could go on and on.

I have never taken and would not take any of my children to a children’s hospital that is not associated with a teaching partner. That includes my heart healthy children. Not going to happen in my household.

Children’s hospitals that are associated with a medical school as a teaching partner are up to date on the latest and greatest in treatments and surgical techniques. They are cutting-edge and that is where your child will get the best care. I’ve heard so many people–even doctors in the medical field–tell parents that they shouldn’t take their child to a hospital associated with a teaching partner unless they want a resident working on their child. This is total bullshit. Will a resident work on your child? Most likely. With the help of an attending physician.

Another plus for a hospital that is associated with a teaching partner is those scary residents I just mentioned are there 24 hours a day, seven days a week. And even though they’re in residency, they’re doctors. So when you run into the hall because your child has just dumped a crazy amount of blood into his or her chest tubes and the nurse has a panicked look on her face, you can put your hands on an actual doctor and get the resident to come in and check things out and make the call to the attending doctor, who was at home asleep. They can text pictures to the attending, if they don’t already have the answers, and answer questions about what’s happening in real time.

Private hospital at 2:00 a.m.? It may look like a hospital…it may smell like a hospital, but good luck finding a doctor. They’re all at home sleeping.

Something else to keep in mind when choosing a pediatric heart center: How many congenital heart surgeons do they have? If they have one, RUN. RUN quickly and RUN fast. Any CHD program worth its salt will have AT LEAST TWO pediatric heart surgeons. And here’s why. Pediatric heart surgeons need a day off every once in a while. They have families. They take a vacation. They take medical mission trips to third-world countries and fix children, who would otherwise not receive that life-saving care. Even when your heart kids are stable and everything seems perfect, their health can turn on a dime. I don’t know about you, but I don’t ever want to be in a situation where there is no backup surgeon, who has at least assisted on surgeries your child has undergone and participated in conferences regarding his or her care.

You want a congenital heart defect program that reports their outcomes. If they do not participate in reporting their outcomes…RUN!

Does the children’s hospital have a dedicated CVICU? You don’t want your heart kid mixed in with a bunch of kids who’ve had brain surgery and God knows what else. CHD patients need very specific care and the intensivists in the CVICU should not be having to constantly shift gears thinking about treatment.

Another question to ask: Does the hospital have a PEDIATRIC CARDIAC anesthesiologist? You need both of those terms in front of anesthesiologist. I don’t care how many times that surgeon has worked with that anesthesiologist, you want a very particular kind of anesthesiologist for your child.

Does the facility have the ability to do pediatric heart transplants? Here in San Antonio, there is nowhere you can go and get a pediatric heart transplant. That’s something I like to have in my back pocket. If things don’t go as planned, you can be left scrambling for a transfer to a transplant facility, which may or may not accept the transfer depending on how sick your child is at that point. Your child could possibly be so sick that transfer is not possible and your left with no options.

Is the children’s hospital recognized as a Center for Excellence through your insurance plan? If it’s not, that’s a huge red flag.

And above all, trust your gut instincts. You get those feelings for a reason. And you know your child better than anyone. If things are not adding up and you feel like you’re being told one thing and something else is happening, get a second opinion ASAP. If your doctors act like you should wait for a second opinion or try to discourage you from seeking a second opinion by making you feel like you’re overreacting…RUN! I’ve never been sorry that I’ve gotten a second opinion. If the surgeon or doctor who is treating your child is confident in his or her plan of action, they should encourage you to get a second opinion if you want one and help to facilitate that process as fast as humanly possible.

You can take my advice or leave it. I’m giving you guys the benefit of my 13-plus years of experience in this heart world. Not because I think I know it all. I am the first one to tell you that I don’t. I’m not an expert. However, I am sharing this in hopes that I can prevent even one baby from needless suffering. I cannot prevent suffering. This is CHD we’re talking about. But when armed with the right tools and information, we can make a difference in suffering versus needless suffering.

You have a choice. The pediatric cardiac surgeon who is going to perform surgery on your child works for you. A lot of people sort of have the impression that they get what they get and they can’t throw a fit. Your surgeon, your choice. If you don’t like him or her, find someone you do like. If you’re losing confidence, fire that person. They work for you. Your child is the client. And since heart babies cannot advocate for themselves, that job is up to you as the parent to make sure they are getting the best care possible so that they may have the best outcome possible for their particular defects.

And if anyone ever has any specific questions, I can always be reached at crazyheartmama@gmail.com. I’m happy to share my experience, offer support and give whatever guidance I can in this area.

A gratuitous picture of Colman because at 13, he’s still so darned cute.

Heart Hugs,

Heather