My Book Review

I feel myself about to get long-winded. I couldn't resist digging into my new book as soon as it came: "Walk on Water: Inside an Elite Pediatric Surgical Unit." The author, Michael Ruhlman, is fascinated by people and work, in particular people who excel at their jobs. Apparently, he has written a lot about top chefs. He switched gears back in 2000, when he was introduced to Roger Mee, the well-known and well-respected pediatric cardiac surgeon at the Cleveland Clinic. Ruhlman, a Cleveland native, shadowed Mee and his surgical team for a year in 2000 to see for himself what a great surgeon was made of. And the book was published in 2003, and Mee retired from the Clinic in 2005.

The books wastes no time getting into some harrowing moments of surgery, telling the stories of babies born with complex congenital heart defects who are on the brink of disaster ("running toward the goal line in a full out sprint" is I believe how they put it). And this surgical team, for better or worse, manages to tackle them at the one yard line and keep them in the game. The book weaves in and out of different families lives, while pausing to give historical accounts of the development of CHD surgeries. It's written really well and flows easily. The extensive research that Rulhman did was evident, and a lot of the conversations he had with CHD surgical pioneers, some of who still practice today, was interesting. It is a reminder of how young heart surgery is and how crazy it evolved (example: the first heart cath was performed by a German doctor on himself because his boss wouldn't let him try it on someone else!).

The surgeon himself, Mee, seems still kind of an enigma to me. He described himself as a regular bloke who didn't love to operate. He had some of the best success rates in the world for some of the most difficult CHD surgeries and was excellent at what he did (one of the staff says in the book that his surgeries look like God himself did them). He demanded perfection from his team- surgical residents, fellows, his P.A., the anesthesiology team, and nursing staff. He had a family, but in essence was wed to his job. The pressure on him, placed by the families of these sick babies and children, must have been enormous. I've been there as a parent. In fact, it took its toll on his surgical partner, Jonathan Drummond-Webb, who committed suicide after leaving the Clinic to head a pediatric heart surgical center in Arkansas (after the book was published)

While the book was really interesting and I was engrossed, I started to get depressed by it around 2/3 of the way in and made myself take a mini-break from it before finishing it. Being the mom of a heart patient, there is only so much you can read before you start to be saddened by it all. There have been some amazing strides made in the outcomes for these patients, but there is just so much that is unknown.

The book also focuses on some disturbing things I suspect that the author himself did not expect to find, which is that decisions aren't always made based on what is best for the patient. Let me back up a minute. CHD (heart defects that someone is born with) and acquired heart disease (coronary artery disease) are very different from each other, and Mee advocated for a very distinct separation in the hospital between the two. I have read this in other places and have read it here that the numbers prove that the more CHD surgeries a center performs, the better they will be. As one cardiologist says in the book: anyone can be taught how to remove an appendix, but not everyone can be trained to do complex CHD operations. Even within the roughly 35 possible CHD diagnoses, every heart is different. Mee was an experienced surgeon and was still seeing things he had never seen before. The book follows a few of the patients who have come to the Clinic because they had previous surgeries done at other centers and were now in heart failure, and Mee sorted things out and often corrected those surgeries. Children were being operated on at centers that weren't experts in CHD. Cardiologists weren't referring parents to the best centers because they possibly faced being reprimanded for referring out of their own hospitals (although not many would admit to that). Surgeries were the money maker. What good is it to have all the cardiology patients, but not capitalize on the surgeries because you're referring them out? The focus was not the patient and the best care for them. It was often about surgeons attempting surgeries they weren't the best at or sometime not even capable of doing. And, competition between hospitals got in the way of what might have been best for the patient. At one point, as one of the cardiologist explains to Ruhlamn, UH's Rainbow Babies and Children's Hospital didn't have a pediatric heart surgeon and teamed up with Columbus Nationwide hospital, and surgeons were coming up from Columbus to perform surgery. According to UH, they were only performing low risk heart surgeries and not the most complex, but I'm sure there were parents that may not have realized their surgeon was going to perform their kid's surgery and then go back to their home hospital 2 hrs. away, all the while there was a surgeon at the Clinic 5 minutes away that was world renowned. Of course there are two sides to every story and who knows what really happened. I do believe parents are at the mercy of what they're told, and the information they may need to make the best decisions is not always readily available or given to them. I have tried to look up mortality rates for different hospitals and they are hard to find, especially if the hospital doesn't voluntarily publish them. Parents in a desperate situation (imagine thinking your newborn baby was healthy, but then within hours needing to be transported to another hospital to have surgery) rely on the information they are given by the diagnosing doctor. I know that's how it was when Sofia was born. Things happened very quickly and were not afforded time to research who the best surgeon was. And at the time, I kind of though, maybe naively, thought a surgeon was a surgeon. Not that I didn't think heart surgery wasn't complex, but I certainly didn't realize the differences between acquired heart surgeries and congenital, nor the difference between CHD surgeons and how this can impact the child for the rest of their life.

It leaves me now thinking about our decision to have her surgery completed at the Cleveland Clinic. Hearing a few months ago that the chief surgeon left the Clinic had me on edge. I trust her cardiologist, Dr. Edwards, and I hope he would give us advice based on what he would do if it was his own child and do what is best for Sofia. I liked the surgeon, Dr. Stewart, and I have to have faith that he is good at what he does. There is certainly a lot that goes on behind the scenes that parents don't know about. As a side note, the Clinic ranked 1st in the U.S News and World Report hospital in acquired heart surgeries (for something like the 19th year in a row), and the pediatric congenital program ranked #28. It's based on a number of factors (like volume of surgeries, nurse to patient ratio, reputation with specialists, infection prevention, etc.)

The patient stories were good and I can certainly relate to a lot of parents. I only cried once and it was in relief at how one of the patient stories turned out (there were definitely other moments where I could have cried my eyes out though). Given what I now know, I might have chosen to wait until after Sofia's surgery to read it, but what's done is done and now I know the good, bad, and ugly at least. It leaves me a little sad that this team is no longer in existence. What I need is a sequel made in present time! It was quite interesting reading a book where the "characters" were doctors and staff that we've met.

How full is your glass?

I've been thinking a lot lately about our perceptions in life and in relation to CHD. How optimism and pessimism play a role in our outlook towards our health and well-being is interesting to me, and I'm not really sure if I am inherently one or the other. I'm a work in progress. I know that as Sofia's surgery is coming closer, the ups and downs are frequent. I think if you're not a half glass full type of person, then CHD can be seriously overwhelming and probably debilitating at times. There are still days I feel sorry for myself and for Sofia (luckily these are fairly infrequent). The half is glass empty side of me says: Sofia has CHD. It is unpredictable. Surgery is awful. CHD is a lifelong condition. It is unfair. She could face serious complications down the road. But, the glass is half full side of me reminds me of the buts (yes, she has CHD, but...) she's doing well. She's healthy otherwise and happy and smart. She's got a bright future. She has family that loves her. There are kids and families that are struggling far more with CHD and other conditions than we are. I think we're all entitled to our glass half empty moments, but I also think we probably owe it to ourselves to be reminded of things we are grateful for. So everyone probably has some little superstitions or idiosyncrasies, and one of mine is something I started doing without realizing it. Ok, so whenever I read the news, I always find there is so much bad and sad that I always end by reading a good or funny story. Sometimes I have to go back and search out a good story just so I can finish.

5 Things I hate about CHD

1- it's a killer -1 million babies born each year with CHD. 100,000 won't live to see 1st birthday
2- it's complicated - high school biology (and college biology for that matter) didn't prepare me for the complexity of CHD and leaves me feeling inadequate when it comes to cardiology
3- it can't be cured
4- it gave me a lifetime membership to an exclusive club that I never wanted to be a part of, which means sometimes you feel like you're actually on the outside
5- it has brought me to my knees, literally

and in the spirit of having a glass half full attitude, here are the things I am thankful for when it comes to CHD

1- I've met some amazing people that I would otherwise never have known
2- although there is no cure, advances are being made everyday (just an example see the Popular Science article this month on the mechanical heart - totally fascinating) read this: http://www.popsci.com/science/article/2012-02/no-pulse-how-doctors-reinvented-human-heart?cmpid=tw)
3- Sofia has defect that that is directly impacted by surgical advancements - 40 or 50 years ago she wouldn't have made it to where she is now
4- Sofia is thriving despite her condition - developmentally, socially, physically
5- I'm working on this, but I'm trying to not sweat small stuff, remember what is really important, and appreciate every moment

New Read

I ordered this book (Walk on Water: Inside an Elite Pediatric Surgical Unit) and can't wait to receive it in the mail. Excited to read it because it is not only about pediatric heart surgery, but because it is about the Cleveland Clinic.

Here is the description:

Described by one surgeon as “soul-crushing, diamond-making stress,” surgery on congenital heart defects is arguably the most difficult of all surgical specialties. Drawing back the hospital curtain for a unique and captivating look at the extraordinary skill and dangerous politics of critical surgery in a pediatric heart center, Michael Ruhlman focuses on the world-renowned Cleveland Clinic, where a team of medical specialists—led by idiosyncratic virtuoso Dr. Roger Mee—work on the edge of disaster on a daily basis. Walk on Water offers a rare and dramatic glimpse into a world where the health of innocent children and the hopes of white-knuckled families rest in the hands of all-too-human doctors.

Think I should read this before or after Sofia's surgery?

Date Set

Heart cath is scheduled for 4/16 (Dr. Golden)

Surgery is set for 5/10 (Dr. Stewart)

Having a little bit of reality check that this is really going to happen after hearing all the vaguely familiar instructions: no food after midnight, aspirin day before ok, but not day of, only one parent can go back to the cath lab while they put her under, probably an overnight stay if they have to cath through liver, she has to lay flat for 6 hrs., where to check in, where to park, blood work that will need to be done, how to pre-register, etc. etc. etc.

He had me at "beautiful"

Today marks the first day of our newest journey with Sofia's heart. Actually, it really marks the beginning of the end of her surgeries. This is good. We are prepping for the Fontan surgery and today met with her new surgeon, Dr. Robert Stewart at the Cleveland Clinic. This blog has probably been a long time coming, but there was always a part of me that dragged my feet in writing about Sofia's heart. Too emotional, too tedious (where to begin??), too big of a project. Now I feel confident that I can start writing and it will be informational and probably a bit therapeutic.

So, today we met Dr. Stewart. We have always known that Sofia would need 3 surgeries. She has tricuspid atresia, or a hypoplastic right heart (the right side of her heart was underdeveloped). She had a BT shunt a 4 days old and had the Glenn surgery at 5 1/2 months old, which were both performed by Dr. Mumtaz before he left the Clinic. The Fontan is the completion of the "correction" (I put that in quotes because anyone who has CHD or has family with it knows that most defects aren't corrected to work like ours, but they are managed. Sofia's heart won't function like ours; it will work a much different way...but it will still work). Because of her anatomy, she is not fully oxygenated right now (pulse ox is low 80s), but after the Fontan she will be in the 90s. In other words, this surgery will make her pink!

I haven't been to the Cleveland Clinic downtown since Sofia's Glenn surgery in the summer of 2009. Oliver has taken her a few times for sedated echos, but she sees her cardiologist, Dr. Edwards, at Hillcrest for convenience sake. I am always awed by the main campus. Visually, it resembles a museum more than a hospital. You get get off the elevator and walk down the tunnel of bright changing lights and ascend up the long escalator to the main lobby, where today there was a pianist playing. Sofia loves the aquariums there (look mom, there's an eel under that rock!). The other thing that always strikes me is the diversity - so many different people (patients and staff included) from all of the place. Nice to see that. It was the smell that took me back to Sofia's previous visits there. Perhaps a little PTSD. It's not even a hospital smell. Can't really describe it, but if you blindfolded me and put me there, I'm almost certain I could identify where I was. Didn't bring back terrible memories this time. Maybe they are fading?

Dr. Stewart was running late, so we a lot of time to sit in M41, the Pediatric and Congenital Heart Center, office. Then it turned out that Dr. Stewart was taken away by an emergency, so we would be waiting for about an hour after our scheduled appointment time. Thank goodness we had the foresight to leave Adelaide with my mom back home. So there was a lot of time to people watch. It's kind of a strange feeling knowing everyone coming in the door has CHD. It sounds silly writing that because we were at the Pediatric and Congenital Heart office so of course everyone there has a heart condition or is a relative of one, but it's just weird that you have this in common. Everyone knows something about you as soon as they lay eyes on you.

There was a woman there who was pregnant with a baby with hypoplastic left heart syndrome (underdeveloped left side of heart, opposite of Sofia's). It took me awhile to figure out (from eavesdropping, of course) that she was in fact the pregnant woman. There were a group of people and I heard them referring to a baby, but it took me awhile to figure it all out. And we had awhile. It through me off because she appeared to be at least in her mid-40s and at first I wasn't sure if she was the grandma of the baby they were talking about or the mom. She had a teenaged son, husband, and mother-in-law with her, and the group had just come from a consult with the surgeon. She was laughing and chatting and definitely appeared to be in good spirits. She was relieved that it was possible that her baby, a girl, might not need the first of the 3 planned surgeries. (Sometimes, in spite of the hypoplastic heart there is a balance and the lungs get enough blood and oxygen without having to do the shunt- a lucky break). There was a Cleveland Clinic staff member - social worker maybe? - guiding them around and they were waiting to meet with one of the peds heart nurse practitioners. I went back to the question that sometimes pops in my head from time to time: better to know about your baby's heart problem while pregnant or not until after your baby is born? I, of course, didn't know until after Sofia was born. While either would be shocking, it looked like there was something I definitely missed out on by not knowing ahead of time: having a tour of the hospital, meeting all your baby's doctors, being part of the plan. Someone holding your hand and walking through the steps. Of course, what I did gain was a pregnancy without the stress of knowing I had a baby with a serious problem. Their conversation was light. I can't remember having one bit of light conversation at the Clinic for whole first month Sofia was there. Maybe this pregnant mom doesn't know what she's in for (handing her crying baby off to go to surgery or wondering why your tiny baby hasn't caught a break yet), or maybe she's just more well adjusted to it than I was. Just made me think how our experience might have been different if Sofia had been prenatally diagnosed. Maybe better, maybe not. I don't really think too much about this question too much anymore as it doesn't really affect anything now, but today I was reminded of it.

So back to Dr. Stewart. We were wound back around in the offices at M41 to a place we hadn't been before. I never realized the offices went so far back. We found ourselves at the end, in Dr. Stewart's corner office with a view. I would imagine this is where we would have been brought if Sofia got diagnosed prenatally and we had the heart tour. There was a t.v. screen with live feed to the OR, which was empty at the moment. A big dry erase board, hidden by cabinets, on which Dr. Stewart would later draw pictures of Sofia's heart for us using blue and red markers, representing oxygen poor and oxygen rich blood. I felt like I was a student back in biology class or something, but I probably needed that. I could tell right away that we would like him and we have nothing to fear entrusting this man to perform Sofia's surgeries. He had 3 wooden chairs in his office with the emblems on them for Northwestern, Standford, Harvard. The trifecta of ivy league? It wasn't his education though (although that probably would have been enough) that made me trust him. He was confident, speaking as if we had already made our decision that he was going to do the surgery, but that wasn't a turn-off. He described Sofia as low-risk patient for Fontan.

He called her echo "beautiful" when he pulled it up on his computer screen to view. I would imagine that only another mom of a heart patient might know what it feels like when a doctor calls your child's echo beautiful. I asked the questions I wanted to. He would put money it that Sofia would probably have a 4 (yes, 4) day hospital stay. I would be grateful, but I would not put money on that. He has seen it be as long as 3 weeks, so let's hope for the best. I just realize how amazing all these doctors and nurses are. Truly. The heart is so complex and after 3 years of studying Sofia's condition I'm still not sure if I could really explain it to someone! And that is just one of many, many defects. He does about 1-2 Fontans per month, which to me didn't seem like a huge volume. Surgery to be in May. Heart cath in April, to be performed by Dr. Golden. I like that Dr. Stewart's opinion is that this will be a straightforward surgery. He said in the cath, they will get a good look at the inferior vena cava (large vein that receives blood from lower extremities and delivers it to the right atrium - had to look that up for the sake of accuracy), and whatever it looks like he will be able to work with it - not that he is expecting it to look bad. They will get pressures in the cath and also look at the pulmonary arteries so he knows what to expect for the surgery itself.

Oh, and the other thing we learned is that he will keep her heart beating when he does the surgery. This surprised me and I'm not sure why. Was her heart kept beating for the Glenn? I think so, but I am ashamed to admit that I don't know. He will keep her on bypass to keep her oxygenated though.

So it was a good visit. Probably better than I expected, and I feel relieved. Weird to me that I feel relief even before the surgery is done, but it's a good feeling. Sofia will be in good hands. Her favorite characters right now are the Richard Scarry Busytown ones, the old books and t.v. with animal characters. Anyway, she asked if she could have her surgery at the same hospital that "Huckle" had his tonsils taken out at - Busytown Hospital. I guess the Clinic will have to do.