You often wonder what happens to pediatric heart patients after their surgeries are over. Here’s a story about a young man who didn’t let early surgery slow him down. Click here to read.
I’ve been searching for links to interesting stories involving pediatric heart surgery. This is one of the more interesting ones I stumbled across, about a mom who wanted to really help. Click to read the article.
One thing I began to wonder as I spent more time staring at x-rays and ultrasounds and MRIs is just how much information the surgeon can really get off of these images when it comes to an organ as complex and difficult as the heart. So I asked Dr. Guleserian if it was ever a surprise to cut into a chest and see things she didn’t expect to see.
“The one thing that the echo, the cardiac catheterization, the CT angiogram, the MRI that you have for your imaging studies, they one thing they can’t tell you about are the adhesions. They don’t tell you about the scar tissue, what’s stuck to what inside the heart structure. They don’t tell you, for instance, that the atrium’s really thin and it’s plastered to the sternum. What you can get are clues that some structures may be in areas that you would rather they not be. But, how bad the scar tissue is on the inside, how bad those adhesions are on the inside, it’s like Forest Gump’s box of chocolates… you never know what you’re gonna get.”
I am pleased to announce that after much waiting, Dr. G and I have finally entered the home stretch of the interview process for our book. We are now discussing, in great detail, the transplant operation for two-year old Rylynn which will be the centerpiece of the story.
Just to give you an idea of what I’m working with, as a medical outsider, here’s just a snippet from a surgical report on the case…
“Rylynn is a 2-year old, 10.45 kg young lady with a prenatal diagnosis of hypoplastic left heart syndrome (mitral atresia and aortic atresia) with a 1.5 mm ascending aorta. She underwent a Norwood procedure with Sano modification in the neonatal period followed by a directional Glenn shunt and main pulmonary arterioplasty. She initially did well, however she developed severe tricuspid regurgitation and severe right ventricular dysfunction.”
Just so you see what we’re dealing with here. Dr. G is putting it all into civilian terms. But as the transplant took some 14 hours, the interviewing will be a lengthy procedure as well.
We wish we could give you a more firm date, but we are aiming for sometime in the fall. Whenever we have something more firm, you’ll be the first to know. Until then, here’s a communication we got from somebody eager to read the book.
“I have a surgical technology degree and was able to participate in a major heart bypass surgery. I was able to hold the beating heart, hold the heart after the patient was alive by only the heart lung machine, and able to hold the beating heart after the heart lung machine was disconnected and the heart shocked back into normal rhythm. I feel in love with the idea that I was able to hold the “heart” of a human and feel it’s beat in my hand. The 150 surgical cases I participated in during my clinical rotation was on of the most amazing experiences in my life. I was blessed to be the top of my class and able to participate in many different critical surgeries on every body system. Having the opportunity to spend 6 months at LSU Medical Hospital/Health Science Center allowed for participating in a wide range of surgical speciality operations. I would love to know where to preorder your book and when it will be available. Thank you for sharing your amazing story with the world.”
Thanks, Brigette. Great to hear from you. And thank you for what you’re doing.
As guests of the Red Sox, Dr. G., Andrew and the traveling party all went to Larry Lucchino’s house to relax before they were scheduled to return to Fenway for the 7:20 game. The two of them, surgeon and patient, walked around the house, exploring. And eventually they reached Lucchino’s office, where a large, gold trophy sat on a credenza behind the desk. Dozens of flagpoles sprouted up from the base of the trophy, and when the two Red Sox fans got close enough to it, they saw it was the trophy from the 2004 World Series. Consider the odds. In 1994, Kris Guleserian was a surgical intern at Brown University Medical Center in Rhode Island, Andrew was born in Midland, Texas, and the Red Sox finished 4th in their division, winning only 54 of 162 games. Ten years later, the Red Sox won their first World Series in 86 years. Three years after that, this strange confluence of events and lives got to Fenway Park for another Red Sox World Series. After an all too brief rest, the traveling party returned to Fenway and another round of press interviews. The PR staff of the Red Sox instructed Andrew as to what would happen when they brought him out to toss the first pitch, where he’d stand, who would be catching. And Kris was content to stand on the sideline and watch.
“I told him, ‘Andrew, you’re going to be awesome. You’ll be great on the mound. I’ll be right over here watching.’ And the Red Sox people are saying, ‘No, Dr. G., you’re going out there with him.’ So now, James Taylor is singing the National Anthem to a full house and it’s dead quiet until he finishes. And they begin to introduce Andrew and tell his story, and then the PA guy is saying, ‘And his surgeon, Dr. Kristine Guleserian, is from Boston, and attended Harvard, and Brown Medical School…’ and guys near me in the stands are yelling out ‘Hey, will you marry me?’ and I’m like, ‘Get those guy’s names!’
“And just before we walk out on the field Andrew asks me if he has to wear his surgical mask, and I said, no, not for this moment. I’d faxed all his records to Boston Children’s just in case something went wrong. He was supposed to wear a mask to keep germs out, and I’m thinking, ‘He’s gonna get sick, I’m gonna get fired.’ And then, when you do a sternotomy, when you cut somebody’s chest open and then you wire it back together, you tell them, basically, ‘NoNothing for six to eight weeks.’ And here, this kid is barely three weeks out of transplantation, and he’s going to throw a baseball before a stadium full of people and national TV.
“And then, the stadium got completely quiet as he threw the pitch. And when the catcher caught it, everybody just went crazy. It was wonderful. So now we’re walking up through the stands to Mr. Lucchino’s box, and all these big, tattooed Boston fans are high-fiving Andrew, ‘Way to go, Dude! You rock!’”
Finally, in the Red Sox suite, a chance to sit back and watch some baseball, in between meeting movie stars and politicians who popped in and wanted to see the young pitcher and his surgeon. Curt Schilling pitched a gem for Boston and the Red Sox won 2-1. After the game, like any good fan, Andrew wanted to head for the souvenir shop. It was then that Kris confessed her gambling secret to him.
“I told him what I’d done in Vegas, how I bet on his number, and I handed him the money and told him to get anything he wanted. But I realized at that point, it’s now midnight, and between meeting people in the suite all night and chatting with everybody, I hadn’t had anything to eat, and I was starving. But then, one of the Red Sox VPs comes over and asks if Andrew would like to meet some of the players, and the one he really wants to meet is Josh Beckett, the pitcher, that’s his hero. The guy takes us down to the clubhouse and we meet everybody, we get pictures with every player. And all these major league players are coming up to Andrew and high-fiving and telling him how great he did. And they meant it. They were really, genuinely happy for him. And then, we figure most of the players are on the bus and I haven’t met Mike Lowell, who is my favorite, and we’re just about to go and out of the locker room walks Mike Lowell, freshly showered, smokin’ hot, right? And we get a photo of the three of us. And then they have to go.
“Two days later, we’re back in Dallas and we’re doing a live morning show out of New York, and Andrew gives me a picture his family took of him, and me and Mike Lowell. But Andrew tells me, ‘I cropped myself out, so it’s just you and Mike now.’”
People all over north Texas began to contact Children’s Medical Center and Dr. G in order to donate money to help make the trip happen. But eventually, it was a page from the Red Sox president, Lucchino, which set the wheels in motion big time. The Texas Rangers baseball club got involved by donating $15,000 for fuel for a medical jet to take everybody from Dallas to Boston. Life Flight, Inc. donated a medical jet, fully outfitted with whatever might be needed in case of an emergency, and four pilots. Press conferences became an almost daily occurrence as the date of the trip approached. As Kris, Andrew and his mother, and several others boarded the plane, the Rangers gave Andrew a bag full of team items. Everybody settled in for the flight to Logan Airport.
“When we got to Logan, it was the same thing all over again,” said Kris of her return home. “A huge press conference at the airport. Then, we have our own private Red Sox limo to take us around town. Really it was more like a gigantic bus. And the first place we went was to Fenway Park. Andrew walked in just amazed, seeing the Green Monster, the big left field wall, and the diamond, and everything. And while we were sitting in the dugout, the Red Sox mascot, who’s also called the Green Monster, came over and began messing with him and they were having a lot of fun. The phone in the dugout that goes to the press box started ringing, and the Monster kept indicating to Andrew that he should answer it. Finally, he did. He sat there for a moment, and his eyes just got huge. And then he said, ‘They want me to throw out the first pitch tonight!’ And I’m thinking, this day just keeps getting better and better! Then they moved Andrew out on to the field and reporters from all over came up and were asking him questions about how it felt to be there and what his heart transplant went like. And I was looking at all these Boston sportscasters I grew up watching, and I’m in serious ‘Little Girl’ mode.”
And yet, in the way that fate works, events concatenate in the strangest of ways. Two medical conferences, one in Las Vegas, and one on a cruise ship, came up during Andrew’s recuperation. In Vegas, where her father and brother joined up with her, Kris decided she wanted to take a flyer at roulette. So she got to the table and after some false starts on the digital roulette betting screen, she finally got down a $15 bet on number 9. Ted Williams number with the Red Sox. Andrew’s number on his Little League team. Number 9 hit and she got paid off at 33:1. She wanted to rush to a phone and call Andrew and tell him, but her brother told her it might not be a good idea to tell a 13-year old that you won money gambling on him. So, Kris put the money aside. Then, at the conference on the cruise ship, she became doubly distraught when the TVs in the ship’s sports bar were all tuned to college football games and she couldn’t track the Red Sox progress in their American League Championship Series against Cleveland. The Sox were down 3-1 in the best-of-seven series to determine which team would advance to the World Series when Kris met up with her cruise ship. Overcoming that deficit was next to impossible. But they won game five in Cleveland. Then, somebody on board ship mistakenly informed her that the Sox had lost game six, which meant the series was over. She began her talk to the medical group by asking for a moment of silence for the Red Sox. She was so overwhelmed by news of her teams defeat that while all her medical friends went to party, she went by herself out to a chair on deck to read.
“As I sat there, feeling like the biggest loser on the boat, one of the guys from our group came by and he had a Reuters feed on his pager and it said Boston had won game six! We were still alive! So now, I get back home and I invite Andrew and his mom to come over and watch game 7. It was a close game, and they had to leave in the 7th inning. But the Red Sox had already broken it open and won, and now they’re in the World Series.”
By this point, the story of Andrew, his love of the Red Sox, his heart transplant, and his Boston-bred surgeon had begun to make the rounds, first on local TV in Dallas and, before long, in cities like… Boston. And Kris’ Red Sox luck continued. It turned out that the president of the Red Sox, Larry Lucchino, is married to a woman from Dallas who still has family there, including her sister, Stephanie Wilkinson. Stephanie is up on the story, and is calling her sister in Boston to tell her all about it. And somewhere along the way, as these stories have a habit of doing, it took on not only a life of its own, but a false identity. It seems that in the telling and retelling, it became gospel that Kris had promised Andrew tickets to the World Series if the Red Sox made it. But there were dozens of obstacles in the way; everything from, would the Red Sox go along with this whole thing to, was it safe to have a kid 21 days out from a heart transplant fly halfway across the country and spend a chill autumn night outdoors at a baseball game.
Amid this on-going, real-life drama, and with a schedule already crammed full of surgeries and consults and teaching and conferences, Dr. Guleserian decided to take on a rare social engagement.
“Two of the cardiologists at the hospital were pregnant, so I offered to throw a double baby shower for them at my house. And of course the only way I would do it was to do it all myself. I’ll make the tea sandwiches and cut the crusts off. I’ll have the salmon, the capers, the eggs, everything. Invitations were out. People were to begin arriving Sunday at noon. Sunday morning, 4am, I get a call saying, ‘We’ve got a heart for Andrew.’ It was a 23-year old woman who had just given birth and died postpartum. Young, healthy woman. Small, perfect size, blood type was right and… it was just next-door at Parkland Hospital. No need to get on a plane and go on an organ harvest three hours away.
“So, at four in the morning, I start making the food for the shower. I labeled everything for my friends who don’t really cook or do the gourmet thing, because I am kind of a stickler for perfection. I had sticky notes everywhere about what to put where. ‘Don’t forget this.’ ‘Do that.’ So I set it all up, and then went into the hospital to do the transplant. And later in the morning I called one of my friends and told her I couldn’t be there for the shower, but here’s where I hid my house key and all that so she could go in and kind of run everything. Have a great time. And as a joke, when they knew I was in surgery, they called to ask me where my fire extinguisher was.”
Because this surgery was to have some significance as the 100th heart transplant at Children’s Medical Center, Kris decided to invite back the surgeon who began the transplant program, Dr. Steve Ring. Dr. Ring performed the first heart transplant at Children’s in 1988 as head of the cardiothoracic surgery department, and he was flattered to be asked to assist Kris, his former underling, in the surgical procedure. The surgery was fairly routine for what is listed on the official surgical report as an “Orthotopic Cardiac Transplantation.” Once the surgical team got word from Parkland Hospital, just next door, that the donor heart had been harvested and was en route, Andrew was anesthetized. The skin on his chest was cut open with an electronic scalpel called a “Bovie” which cauterizes as it cuts, minimizing bleeding. Then the breastbone was cut open with a small surgical saw, and the chest drawn back with a retractor. Lines were placed in Andrew’s pulmonary artery and aorta to lead his blood into the heart-lung machine for oxygenation, and then back into his body. His body temperature was lowered to induce a state of hypothermia, which would offer the surgeons more time to keep him “on pump,” as a cooled brain dramatically slows down body function and, thus, reduces the amount of oxygen needed. Once fully on the machine, the team cut Andrew’s heart out of his body, and it was placed aside in a small dish for later examination by pathologists.
Because the donor was slightly larger than Andrew, the parts of her heart which would tie into his had to be trimmed back a little bit to ensure a perfect fit. Once the new heart was in place, Andrew’s body was re-warmed. When he was weaned from the heart-lung machine and blood circulation resumed, her heart began to beat in his body. All in all, it was as normal as a heart transplant can be. Dr. G. and Dr. Ring both stood on small stools near the operating table, making it easier on their legs. They were on the stools for approximately ten hours, without any break of any kind. No water, no restroom. Nothing.
Andrew’s surgery had been something of a day in the park for Kris, when compared to the transplant she had performed just a couple of weeks before.
“The little guy I had transplanted just before Andrew was our youngest, smallest transplant ever. Five pounds in weight, one week old. While he was getting better, Andrew was waiting for a heart to become available and I started joking with him. ‘You know, if you get better soon, we could head to Boston and see a game at Fenway because my family has had season tickets for years. Maybe we could even make it to the World Series.’ Now, this was August. I had no idea who’d be in the Series.”
“Since Andrew had been diagnosed at birth,” said Dr. G, “he had been kind of used to being around doctors and hospitals all his life, so even though he was sort of scared and nervous, he was still very cooperative, he was a full team player. He was anxious, of course, but he was very easy to talk with. Sometimes, we get kids in who are so sick that they have an arrest, and the next thing they know, they wake up with a new heart. They don’t really participate in the procedure because they are so sick.
“So now, every time I go to see him on rounds, before we talk about anything medical or how he’s feeling, we have to talk about the Red Sox game from the night before. But one Saturday, I’m rounding and I walk in on him and he’s on his laptop, so I ask him what he’s doing and he tells me he’s ordering a new Red Sox cap, cause he left all of his at home in Odessa. I hinted to him not to bother, because I might have something for him. My parents had just sent me a box full of Red Sox gear, including the traditional blue cap with the red “B” on it. The day after I saw him on his laptop, I gave him a little gift box with the cap in it and I put a note in that said, ‘The Best Is Yet To Come.’ And as soon as he saw what it was, he asked if he could wear it during his surgery.”
It was at this point that Red Sox karma began to kick in. Dr. G. had been discussing the Red Sox with Andrew, and their lengthy history of despair; the trading of Babe Ruth; the decades without a World Series win; the perseverance of Red Sox fans through the toughest of times. Then she told him not only could he wear his cap, but that she had a surgical cap that had the Red Sox logo on it, and she would wear that in the O.R. as well. The upbeat optimism of the shared love of baseball provided a needed buffer for what is often the most difficult emotional part of the transplant procedure – the wait for a donor heart and the attendant philosophical drama. There is an almost ghoulish aspect to this wait. As in baseball, somebody must lose so that somebody else might win, in this situation, somebody else must die for this patient to live. And not just die, but die in a prescribed manner, where certain things have, or have not, occurred.
Dr. G explained. “The number one criterion for the donor is heart function. I’ve seen echo reports where the cardiologist wrote on the echo screen, ‘THIS HEART IS NOT SUITABLE FOR TRANSPLANTATION,’ but they put it on the list anyway. Pediatric donors usually have young, healthy hearts. But if there was prolonged resuscitation involved, if there was extreme trauma, if the donor dies because of some infection like meningitis, then that heart is not suitable. Other situations such as drowning, where the right heart has been subjected to high pressures for a long time. There have been reports of HIV and other things transferred to patients via transplantation. I won’t accept one of those high-risk hearts to put in a young person.”