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Jessica
My name is Jessica and I am 17 years old. My family and I have lived in the Richmond area for 7 years. When I was 3 days old, my parents noticed I would turn blue when I cried. They took me to the doctor, who immediately sent me to a Pediatric Cardiologist. The cardiologist diagnosed me with Tetralogy of Fallot. My parents were told I would have to have open heart surgery in order to survive. I can only imagine how it must feel to be told your new baby would have to have a major operation in order to live.
We dealt with months of doctor appointments, Echos, EKGS, and X-Rays. At 6 months old my cardiologist performed a Cardiac Catherization. The doctors told my parents I needed surgery as soon as possible. In August of 1991 at 8 months old I had my first open heart surgery at East Carolina University School of Medicine. After 8 1/2 hours of surgery, I was in the elevator going to pediatric ICU and my heart rate and blood pressure bottomed out. I was rushed back to the operating room and opened back up for 3 more hours. On the 4th day after surgery the doctor was removing a wire that was measuring pressure inside my heart and my blood did not clot and I started bleeding inside and the blood surrounded my heart and my heart stopped beating. The doctor opened me up as quickly as he could in the ICU to let the blood flow out. I was rushed back to the operating room for over 3 more hours. I had to have multiple blood transfusions after that.
My pulmonary valve had to be removed during my first surgery because it was not working. We were trying to wait as long as we could to have a valve put in because they only last 5 to 10 years. I was getting very tired and not able to keep up with other kids, so on June 1st, 1999 I had a homograft pulmonary valve, which comes from a cadaver, put in. After having that surgery I felt great. I had energy and I could keep up with the other kids. I felt better than I ever have. I felt normal.
I am on my 9th year with this valve. I know I will have to have surgery again soon. There is currently research on replacing heart valves through catherization, instead of open heart but it is not available yet. Since I have had numerous open heart surgeries, I have a greater risk of complications with all the scar tissue. I hope and pray I am able to hold out until this new procedure is available. This will be something I have to deal with throughout my life.
My heart condition has made me the person that I am. It has humbled me and I love Life. I don't want to take anyone or any time for granted. God has blessed me and my family in so many ways. I have a passion for the guitar and singing. I love using the talents God has blessed me with to glorify Him and hopefully bless others. Because of the experiences I have had in my life, I have chosen to help people as an EMT and also plan on attending nursing school. People are always surprised at what I have been through because I don't let it get me down. And I never will. I want to use my experiences to inspire and encourage others.
Lauren Gray
After a grueling 24 hour labor, their little girl had finally arrived! What relief, what joy….not quite. There is no baby crying and there is no calm in the delivery room. Nurses and doctors are swarming around. The new mother asks what is going on and is told the doctors need to take her baby into another room. Finally, a nurse comes to attend to the new mother, and instead of the comfort she hopes the nurse will provide, she receives these harsh words, "Your baby is blue, and there is nothing we can do for her."
Several days later the baby is still blue, but now the doctors think, because of the strength that she has exhibited over the last couple of days, perhaps there is something that can be done. They knew they were not equipped to handle this type of situation, but a hospital within the state might just be able to save her.
The family loaded up in the back of an ambulance and braced themselves for the 2.5 hour drive. Upon arrival at UNC Chapel Hill, a cardiologist examined the baby and determined that they would try a surgery which would place a shunt in her heart, and they would see how things went from there. It was her only shot at that point, so her parents agreed to have their week-old baby operated on. The baby started to "pink up" shortly after surgery, and they were hopeful, but warned that this might only be a temporary solution. The child would most likely need surgery every couple of years, taking more steps to repair the defect as the child grew.
After a few weeks recovery, shaken, scared and far from family, Ken and Cindy Gray took their little bundle home. The family found a local pediatrician who was knowledgeable enough about heart defects that they felt comfortable having him care for their child. Every time that little girl sneezed they were at the doctor's office. They knew how dangerous it was for her to get sick. Most colds and viruses would end up in her chest. They became used to the yearly (sometimes more often) treks to Chapel Hill. As their daughter grew into a toddler and started kindergarten they were thrilled that there had only been yearly checkups in contrast to what the doctors had predicted. At age 7, their little girl, Lauren, had her first catheterization, which would prove very productive in staving off more surgery. She participated in dance class, gymnastics class, and played with her friends and little sister. As she became a teenager, Lauren and her family became more concerned with things like driving and dating than about her heart defect. She continued her annual cardiology visits, and as one might imagine, was in for an unwanted surprise when at age 17 she was told that she needed surgery. Technology had finally advanced, and her heart was working very hard within its capacity. If she did not have the surgery, her heart would continue to work at such a pace that it would make a nap necessary after climbing a flight of steps. Needless to say, Lauren was not fond of the idea of that or of surgery for that matter. She suddenly became very concerned about her future. Would she have more scars? Would she be able to continue cheerleading? Would her boyfriend still find her attractive? Was this just the beginning of playing catch up from all of the surgeries she didn't have as a child? The cardiologist who had followed her thus far encouraged the family to seek a surgeon in Alabama for this procedure. Knowing that surgery would be difficult enough without the added hardship of being away from friends and family, the Grays asked if there was a surgeon of the same caliber closer to home. Their prayers were answered when they found Dr. Glenn Barnhart at MCV. Lauren had her valve replaced with a homograft (human valve) and was in the hospital for a week recovering from the procedure. She still has very much admiration for ICU nurses and her entire surgical team, who are heaven-sent for sure. True to her nature and complying with her attitude of not letting her heart defect slow her down, her main concern now was whether or not she would be able to participate in the powder puff football game the next week. It meant so much for her to play in that game. There were two reasons really: now she was a senior and it was her chance to help her class win, and more importantly the coach wouldn't let her participate the year prior. She had claimed that it wasn't fair to the other girls because they had to run laps and Lauren would have been excused. Her surgeons cleared her for play with the understanding that she was to have no hits to the chest. She hadn't planned on getting hit, so that wasn't an issue. She just wanted to be part of the team, and she was. Since that game, Lauren has continued to be a fan of football, though she is strictly a spectator now, but only because she wants to be. Lauren is now 36, and her valve leaks a little, but not enough to warrant any intervention. She takes a blood pressure pill and a baby aspirin to allow her heart to not work so hard, eats a regular diet, works 40 hours, volunteers with two organizations and maintains a social life too! She knows her heart is not "fixed" and the possibility of more surgery is always there, but for now she just takes one day at a time and enjoys every bit of it.
Lauren states, "I hope to inspire others and to let them know that a full life can be lived with a CHD. My personal goal is to spread awareness and hope to help get some legislation passed to improve the insurance issues for people with CHD's. I credit my parents with so much in terms of the normalcy of my life. The truth is, it never really dawned on me that my sister didn't go to a cardiologist like I did or that I was any different. I certainly wasn't cut any slack in the behavior department or in my school work, and I know, without a doubt, that because of this, I am as "normal" as anyone else I know : I am a SURVIVOR and my scar is my badge of courage."
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Show all storiesTetralogy of Fallot
Jessica
My name is Jessica and I am 17 years old. My family and I have lived in the Richmond area for 7 years. When I was 3 days old, my parents noticed I would turn blue when I cried. They took me to the doctor, who immediately sent me to a Pediatric Cardiologist. The cardiologist diagnosed me with Tetralogy of Fallot. My parents were told I would have to have open heart surgery in order to survive. I can only imagine how it must feel to be told your new baby would have to have a major operation in order to live.
We dealt with months of doctor appointments, Echos, EKGS, and X-Rays. At 6 months old my cardiologist performed a Cardiac Catherization. The doctors told my parents I needed surgery as soon as possible. In August of 1991 at 8 months old I had my first open heart surgery at East Carolina University School of Medicine. After 8 1/2 hours of surgery, I was in the elevator going to pediatric ICU and my heart rate and blood pressure bottomed out. I was rushed back to the operating room and opened back up for 3 more hours. On the 4th day after surgery the doctor was removing a wire that was measuring pressure inside my heart and my blood did not clot and I started bleeding inside and the blood surrounded my heart and my heart stopped beating. The doctor opened me up as quickly as he could in the ICU to let the blood flow out. I was rushed back to the operating room for over 3 more hours. I had to have multiple blood transfusions after that.
My pulmonary valve had to be removed during my first surgery because it was not working. We were trying to wait as long as we could to have a valve put in because they only last 5 to 10 years. I was getting very tired and not able to keep up with other kids, so on June 1st, 1999 I had a homograft pulmonary valve, which comes from a cadaver, put in. After having that surgery I felt great. I had energy and I could keep up with the other kids. I felt better than I ever have. I felt normal.
I am on my 9th year with this valve. I know I will have to have surgery again soon. There is currently research on replacing heart valves through catherization, instead of open heart but it is not available yet. Since I have had numerous open heart surgeries, I have a greater risk of complications with all the scar tissue. I hope and pray I am able to hold out until this new procedure is available. This will be something I have to deal with throughout my life.
My heart condition has made me the person that I am. It has humbled me and I love Life. I don't want to take anyone or any time for granted. God has blessed me and my family in so many ways. I have a passion for the guitar and singing. I love using the talents God has blessed me with to glorify Him and hopefully bless others. Because of the experiences I have had in my life, I have chosen to help people as an EMT and also plan on attending nursing school. People are always surprised at what I have been through because I don't let it get me down. And I never will. I want to use my experiences to inspire and encourage others.
Lauren Gray
After a grueling 24 hour labor, their little girl had finally arrived! What relief, what joy….not quite. There is no baby crying and there is no calm in the delivery room. Nurses and doctors are swarming around. The new mother asks what is going on and is told the doctors need to take her baby into another room. Finally, a nurse comes to attend to the new mother, and instead of the comfort she hopes the nurse will provide, she receives these harsh words, "Your baby is blue, and there is nothing we can do for her."
Several days later the baby is still blue, but now the doctors think, because of the strength that she has exhibited over the last couple of days, perhaps there is something that can be done. They knew they were not equipped to handle this type of situation, but a hospital within the state might just be able to save her.
The family loaded up in the back of an ambulance and braced themselves for the 2.5 hour drive. Upon arrival at UNC Chapel Hill, a cardiologist examined the baby and determined that they would try a surgery which would place a shunt in her heart, and they would see how things went from there. It was her only shot at that point, so her parents agreed to have their week-old baby operated on. The baby started to "pink up" shortly after surgery, and they were hopeful, but warned that this might only be a temporary solution. The child would most likely need surgery every couple of years, taking more steps to repair the defect as the child grew.
After a few weeks recovery, shaken, scared and far from family, Ken and Cindy Gray took their little bundle home. The family found a local pediatrician who was knowledgeable enough about heart defects that they felt comfortable having him care for their child. Every time that little girl sneezed they were at the doctor's office. They knew how dangerous it was for her to get sick. Most colds and viruses would end up in her chest. They became used to the yearly (sometimes more often) treks to Chapel Hill. As their daughter grew into a toddler and started kindergarten they were thrilled that there had only been yearly checkups in contrast to what the doctors had predicted. At age 7, their little girl, Lauren, had her first catheterization, which would prove very productive in staving off more surgery. She participated in dance class, gymnastics class, and played with her friends and little sister. As she became a teenager, Lauren and her family became more concerned with things like driving and dating than about her heart defect. She continued her annual cardiology visits, and as one might imagine, was in for an unwanted surprise when at age 17 she was told that she needed surgery. Technology had finally advanced, and her heart was working very hard within its capacity. If she did not have the surgery, her heart would continue to work at such a pace that it would make a nap necessary after climbing a flight of steps. Needless to say, Lauren was not fond of the idea of that or of surgery for that matter. She suddenly became very concerned about her future. Would she have more scars? Would she be able to continue cheerleading? Would her boyfriend still find her attractive? Was this just the beginning of playing catch up from all of the surgeries she didn't have as a child? The cardiologist who had followed her thus far encouraged the family to seek a surgeon in Alabama for this procedure. Knowing that surgery would be difficult enough without the added hardship of being away from friends and family, the Grays asked if there was a surgeon of the same caliber closer to home. Their prayers were answered when they found Dr. Glenn Barnhart at MCV. Lauren had her valve replaced with a homograft (human valve) and was in the hospital for a week recovering from the procedure. She still has very much admiration for ICU nurses and her entire surgical team, who are heaven-sent for sure. True to her nature and complying with her attitude of not letting her heart defect slow her down, her main concern now was whether or not she would be able to participate in the powder puff football game the next week. It meant so much for her to play in that game. There were two reasons really: now she was a senior and it was her chance to help her class win, and more importantly the coach wouldn't let her participate the year prior. She had claimed that it wasn't fair to the other girls because they had to run laps and Lauren would have been excused. Her surgeons cleared her for play with the understanding that she was to have no hits to the chest. She hadn't planned on getting hit, so that wasn't an issue. She just wanted to be part of the team, and she was. Since that game, Lauren has continued to be a fan of football, though she is strictly a spectator now, but only because she wants to be. Lauren is now 36, and her valve leaks a little, but not enough to warrant any intervention. She takes a blood pressure pill and a baby aspirin to allow her heart to not work so hard, eats a regular diet, works 40 hours, volunteers with two organizations and maintains a social life too! She knows her heart is not "fixed" and the possibility of more surgery is always there, but for now she just takes one day at a time and enjoys every bit of it.
Lauren states, "I hope to inspire others and to let them know that a full life can be lived with a CHD. My personal goal is to spread awareness and hope to help get some legislation passed to improve the insurance issues for people with CHD's. I credit my parents with so much in terms of the normalcy of my life. The truth is, it never really dawned on me that my sister didn't go to a cardiologist like I did or that I was any different. I certainly wasn't cut any slack in the behavior department or in my school work, and I know, without a doubt, that because of this, I am as "normal" as anyone else I know : I am a SURVIVOR and my scar is my badge of courage."
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