The heart of this project has been about everyday people living each day and overcoming unthinkable obstacles. Amanda Rice is only 17-years-old, but she has lived through more surgeries than a lot of great-grandmothers. Amy Sanders Vanatta, her mom, calls Amanda her little old lady. Amanda was the youngest and smallest baby per kilogram to survive the heart procedures she went through. She is called a pioneer. She has a will to live and thrive, but my favorite part about Amanda is that behind her many scars, she is a regular 17-year-old girl. She thinks about her future wedding, she wants to hang out with friends, and she really loves camp.
Since Amanda was just a baby when the majority of her surgeries took place, she doesn’t remember a lot of what happened. Her mom helped fill in those gaps.
“When she was born the first thing that we noticed was that her hands looked a little different. Her right hand was more affected than her left hand, but it took a team of doctors to diagnose. They actually misdiagnosed her in Savannah, they said she had a atrial septal defect, which if you had to have a heart defect, that was the one to have, because she probably wouldn’t require surgery until she was like five. And then she just was not thriving, she wasn’t gaining weight, she weighed 7(lbs), 3(ounces) when she was born, and by the time she was nine months old, she only weighed nine pounds. And so she looked like this tiny little baby with these big eyes, but she just had no fat, and so I took her back to her pediatrician. She had congestive heart failure, she had so many holes in her heart. Your heart pumps your blood into your lungs, but hers had so many holes in it, it was mixing. She had no cardiac output. She was blue; her lips were blue. She was weak. She failed to thrive, and she would throw up a lot, because her stomach wasn’t getting enough blood to digest her food. So they sent us to a gastroenterologist, and he was like, ‘Yes, she has a stomach problem, but it’s not her stomach that’s the problem, it’s her heart,'” Amy said.
“We went back to the cardiologist and they were like well, maybe she has a ventricular septal defect. But she didn’t have a ventricular septal defect, she had so many, she had multiple ventricular septal defects. One was 8mm and they said you could drive a train through that in terms of heart. Her body just wasn’t getting oxygenated blood. She’s a fighter. Her condition is called Holt-Oram Syndrome, and it’s a very rare congenital problem — some of the time it’s genetic, and some of the time it’s spontaneous. And we met with a geneticist, and Amanda’s was ruled spontaneous. She’s often said that she is going to win the lottery or Publisher Clearing House because if statistically she is able to beat odds, it should be able to go both ways,” Amy said.
“We go to have surgery, and we get to Eggleston, it was just really heartbreaking even getting up there. When we got there we found out that she had spiked a really high fever overnight, they had to test her for RSV, Respiratory syncytial virus, and she was positive, and so they sent us home. And it was like two weeks that we were admitted to Candler, and that could have been really life threatening for Amanda, because it is life threatening for any baby. She was very small, very sick, but she pulled through, and we went back for surgery. And of course it had to be scheduled on her sister, Megan’s birthday, so they admitted her into the hospital to try to do a valve repair. And the surgeon was really good, and the other surgeons in the operating room said that he had to take her off and on heart-lung bypass, and they thought they repaired her damaged mitral valve. And it looked really good, but it failed. They put fans on her and packed her in ice,” Amy said.
“He said that he had to go out of town for two weeks, and he said that if she was alive when he returned, he would, ‘Give it the college try,’ but that statistically her chances of surviving were not good. And so when I handed her over, it was just horrible, but she came through this surgery and she did really well,” Amy said.
“She got a #17 St. Jude mechanical mitral valve, and she was the youngest patient to survive the surgery. And they called her a pioneer because they had never had anyone that small, per kilo, survive the surgery. So they did papers, she was a subject at Emory. They did a lot of papers on her and studies. After the surgery her electrical system of her heart started having problems, and it looked like she was going to have to have a pacemaker placed. But her surgeon said, ’cause you have a cardiothoracic surgeon, and then you have a team of cardiologists, and the cardiologists wanted her to have a pacemaker placed, but her cardiothoracic surgeon said, ‘Its swelling and inflammation, if you place a pacemaker in a baby she’ll have to have a pacemaker for the rest of her life, I don’t think she needs it.’ And then I remember her cardiologist said, ‘If you don’t let me put a pacemaker in this baby I am going to come to your house and throw rocks threw your windows.’ It turned out that we were about to go home and her heart was going into this block, so she was going to need a pacemaker,” Amy said.
“Well, placing pacemakers should be really routine, but in babies they place the pacemaker, she actually has her old pacemaker and her new pacemaker so you can see both of those, but they place the pacemaker in babies in their abdomen, and the wires are coiled, and they actually have to open their chest again and sew the leads into their heart muscle. Where as if you or I were to go get a pacemaker, it’s like getting an I.V., it’s like day surgery, they make an incision, they thread the pacemaker like an I.V. and it sits in your heart and it paces your atrium and ventricle, but in a baby they can’t do it they way. So they placed the pacemaker, and I can’t even remember what happened, but it wasn’t working, so they had to go back in and she had an infection, they closed her up and they made us wait another week, and then the pacemaker was working perfectly. And I was holding her in the hospital room, and she started going like she had the hiccups but with no hiccup sounds were coming. And so they were like, ‘How long has she been doing that,’ and I was like all night, and they said, ‘Her pacemaker is pacing her diaphragm, we have to do surgery again.” So they had to go back in and at whatever time she had had the infection, she had to have a thoracotomy. This was opened so many times, and they twist tied her sternum, they’re stainless steel but they look like twist ties, so they had to take the stainless steel twist ties out, and so her chest protruded. She had to live with a protruding chest until 2007 when they went back in to do her next valve thing, and they repaired it,” Amy said.
“We wound up with six surgeries in three months. She’s had seven open-heart surgeries where she has been on heart-lung bypass, like actually heart lung bypass. She’s had multiple procedures. She had a balloon dilation of her right femoral artery that was more of a procedure. And then she’s had maybe four hand surgeries on one had, and three hand surgeries on the other hand. But her heart was in such bad shape that they wouldn’t let her surgeon do it at the Scottish Rite Hospital, he had to come over to the heart hospital,” Amy said.
“She’s like my little old lady, she has blood pressure medicine. She takes Coumadin, which is a blood thinner. She has a pacemaker. She takes diuretics. One funny story, one time she lost her bracelet at church, and it says, ‘Heart valve replacement, pacemaker, takes Coumadin,” Amy said.
“…And I went to go look for it, so I went to the office and I was like ‘Hey, have y’all found a medical bracelet?’ and they were like, ‘Yeah, we were about to look up the number, we thought you were an old lady!’ and I was like, “No, that’s me,’” Amanda chimed in.
“Last time I had open heart surgery is when I was 9 years old, and I remember going up to the hospital, and getting there late at night, and they came in and checked me out. And they told me that I had to go in immediately. No one in my family other than my mom [was at the hospital yet], my dad was on his way, and my sisters were still in school, but I wanted to see them in case I didn’t make it, or just to see them before I went in because I was scared. This was the first one I could remember to be awake for, and I went and I called them for them to get there, but they didn’t make it until after my surgery. But when I woke up I saw them, and I was really happy. I got a lot of stuffed animals from the school and letters. Then when I got back to school in January, everyone knew my name, and it was really weird because I was new to the school. So then I met them, and it was really cool and I got a really strong connection with the school I went to, Calvary,” Amanda said.
“Then the last surgery that I had, which was a pacemaker surgery, I got there and it was only supposed to be a day surgery, but the week before my blood levels weren’t right. So I had to go get blood thinner. It was only supposed to be a 2.5 but it was a 1. something, so it was way off and they had to put me on Heparin, so I was just, you know roaming the hospital as a well kid, you know, finding stuff I could get into. I got on the little IV cart, and rolled down the hills. It was fun, I got to see all of the nurses and not have to have surgery that week. I got to play around, and I got to meet Paramore. I was supposed to be there a day, but it lasted three weeks,” Amanda said.
“It’s hard cause you can’t do anything about it, and when people make fun of you, you just have to laugh along with it. Good things, I mean, you meet a lot of people, and I inspire a lot of people. Telling people what I’ve been through, and watching their reaction is pretty cool, because most people don’t really get to speak to people like that. They did a story on me in the yearbook, and they kind of messed up and said I had dinosaur arms, or like a little-tiny arm deformity, but that’s not true. So now me and Megan, my older sister, joke around that I have dinosaur hands,” Amanda said.
“I am not self conscious about my scars, because I have had to live with it my whole life and I sometimes forget that I have scars, but having a hand deformity, I’ll be talking to people or I’ll be doing something and I can’t open a bottle or something, and someone will come help me. And that kind of bothers me, because you can’t do anything about it. And people stare; I don’t really care about staring. People used to make fun of my hands, but you just learn to laugh along with it. Like I will be sitting at lunch and people will be like, ‘Do your hands get in your way?’ and I’ll be like, ‘No, what are you talking about? I have dinosaur hands! Haha!’ I am a sports trainer, an athletic student trainer, for the football team, so you know like wrapping them and stuff, it’s not that hard but I’ll mess up and it’ll take me forever, so someone else has to come and fix it. They don’t really bother me as much as they used to, I used to be really self conscious, and in pictures, I’d be like, ‘Great, can’t wait to get married, with my ring on my left hand.’ People will say, well you can just put it on a necklace, but when you get married you don’t put your ring on a necklace, you put it on your hand. But other than that, I can’t really move my left thumb,” Amanda said.
“So, I have made a lot of friends having heart problems, first of all I am not allowed to play sports because of the medicine I take. I started going to Camp Braveheart, which is a camp for kids with heart problems. Mostly everyone there has a zipper scar, which is where they crack your chest open. Camp is a big part of my life, and not this year but next year will be my last year at camp. So then I want to become a camp counselor, so I want to go to Kennesaw University and work up there in the summer. I want to work for all of the camps — Camp Braveheart, cancer camp, Breathe Easy, all of the camps. I can’t play sports so we zip line, we do things that normal kids can do that we can’t without supervision. We did a giant swing, we did ropes course, zip line, paddle boarding, kayaking, paddle boating, fishing and then I did LIT, which is theatre in training,” Amanda said.