Tuesday, October 13, 2009
All is Well!
It has taken me a couple of weeks, before I was able to write this update. Three weeks ago, we visited the cardiologist and everything seems to be going well. Infact, if he has another great visit in 6 months, then we will be switched to a yearly visit program. You probably are wondering why then it has taken me a couple weeks to post this good news? I learned that Roman will most likely never be able to ride a roller coaster. While this seems trivial in the grand scheme of things, I couldn't help but cry every time I thought about it. Not so much that he can't ride roller coasters with his brothers, but someday he will be a dad (at least I hope some girl will fall in love with him despite he has CHD) and he will never be able to go on the rides with his children. I kind of knew this in the back of my mind, but to actually hear it from the cardiologist broke my heart. Sometimes no matter how hard one tries to stay positive about everything it is hard not for just a moment to cry about what will never be. For now, though I am looking at the positives and that is Roman is finally talking and in full sentences, so this is something to be happy about. No speech therapy -Yeah! I was starting to worry. All is well! All is well!
Wednesday, August 26, 2009
Reflections on having a child with CHD
Tonight I am feeling a little reflective. I think every ones lives change when they have a child, but I think our lives changed even more when we found out that our child had a Congenital Heart Disease. It was like we were children ourselves who were forced to face the hard reality that our child may or may not grow up to be an adult. He may never get married or have children himself. While Tetrology of Fallot is one of the most repairable of the Congenital Heart Diseases, with every procedure comes more risk. There isn't a moment that goes by that we do not worry if he is OK. We ask each other, "does he look blue to you?" Then wonder if we should call the pediatrician to get his oxygen levels tested. His heart will never be like yours or mine. It will always be a repaired heart. His heart leaks and someday he will need another surgery to replace his valve.Tonight, I found out another heart baby has passed away. My heart is aching for her family. http://oliviahuelsbergen.blogspot.com/
While I have a strong testimony in my Savior Jesus Christ and his atonement, at times I am scared and angry. Angry that while Congenital Heart Disease is the number #1 birth defect it receives very little in terms of research dollars. How can we not pay attention to something that affects 1/100 children? One article that was written in the WSJ last week said that doctors often don't have the equipment or tools to treat children without a little guess work because the procedures and tools were not designed for them, but rather for adults. The are also left guessing on the amount of medication given to these patients. After our son had his surgery, I had to drive to several pharmacies because ours didn't carry that medication. While I am grateful for the American Heart Association they spend the majority of their budget studding preventive measures for adults. You read that right preventive! So that you and I can live a longer life, but children aren't even given that same chance. We can prevent heart disease by the choices we make, but congenital is something that you are born with.
Today hug your babies a little closer. Tonight pray that we can end the fighting. May we start putting our energies into finding a cure for Congenital Heart Disease.
Tuesday, August 11, 2009
Little Heart ,Big Problems WSJ
By RON WINSLOW
Matthew Emmerling was just three days old and barely home from the hospital when his mother noticed his feet were unusually cold to the touch. Hours later, doctors determined that he was born with a critically narrowed aortic valve that prevented his heart from getting an adequate supply of blood to the rest of his body. He was in shock, and without quick intervention, his life was in danger.
View SlideshowAndrew Spear for The Wall Street Journal
Joe Emmerling and sons Matthew (left), 3 years old, who was born with a heart defect and is now healthy and active, and Daniel, 5.
To avoid risky open-heart surgery on the infant, doctors figured they could thread a tiny balloon into his heart and inflate it to stretch open the obstructed valve. The problem was that a balloon designed and approved to treat heart defects in patients as tiny as Matthew didn’t exist. Instead, Robert Beekman, a pediatric cardiologist at Cincinnati Children’s Hospital Medical Center, chose an angioplasty balloon that normally serves a different function: opening up clogged kidney arteries in adults.
The adult kidney balloon “is the right size for a newborn’s aortic valve, so we use it,” Dr. Beekman says. But, he adds, using a device in small children that wasn’t designed for that purpose puts them at heightened risk for procedural complications and medical errors.
Matthew’s situation highlights an enduring reality for children born with life-threatening heart defects: Hardly any of the myriad drugs and devices developed for the multibillion-dollar market for cardiovascular disease are designed with kids in mind. Children with heart disease represent too small a segment of that market to justify companies’ investing the time and resources needed to develop specialized products. Litigation worries over products intended for children—and the challenge of conducting clinical trials for treatments often administered to newborns—are other impediments.
It all adds up to what Jim Lock, chief of cardiology at Children’s Hospital Boston, calls a “profitability gap” between the market for children and the much-larger business of treating adults with heart disease. Matthew Emmerling’s doctors had to use an adult-size kidney balloon to open his aortic valve when he was a few days old. The result is that in treating some of medicine’s sickest patients, physicians often must rely on instinct, back-of-the-envelope calculations and anecdotal case reports swapped at medical meetings, instead of the more rigorous clinical evidence that underpins much adult heart treatment.
In a study presented last March at a meeting of the American College of Cardiology, Dr. Beekman and his colleagues found that 63% of 473 patients treated at Cincinnati Children’s Hospital between 2005 and 2008 got devices that hadn’t received regulatory approval for the purposes for which doctors used them. Doctors at Children’s Hospital Boston say that of some 1,000 tubular devices—known as stents—that doctors put in vessels in children’s hearts in recent years, not a single case involved a use that had been approved or evaluated by the Food and Drug Administration.
Some recent efforts aim to change that. An FDA advisory panel recently recommended approval of a heart valve that could be used in children. Various clinical trials, sponsored by the National Institutes of Health and other groups, aim to compare different surgical approaches and different drug regimens in children with congenital heart defects. And the American College of Cardiology next month plans to launch a registry that will allow doctors to compare the outcomes of catheter-based procedures done on children at centers around the U.S.
“We adopt things known to work in adult patients in pediatrics because we’re sort of desperate,” says Gail Pearson, a pediatric cardiologist and medical officer for the Pediatric Heart Network, a clinical-trial cooperative of children’s medical centers sponsored by the NIH’s National Heart, Lung and Blood Institute in Bethesda, Md. “We are trying to move more toward a paradigm where the norm would be if you’re a child with complex clinical heart disease, your care would be guided by a research protocol” based on studies of children, she says.
About one in 100 children is born with a heart defect, which in the U.S. translates to between 35,000 and 40,000 births annually. Some of the malformations heal on their own, but in thousands of cases, either open-heart surgery or less-invasive catheterization procedures are required to repair the problem and often to save the child’s life.
Adapting Adult Devices
While heart surgeons and cardiologists who perform catheter-based procedures have proven remarkably adept at adapting adult devices for use in children, their patients are nonetheless at heightened risk of complications. Devices that don’t fit properly in a blood vessel can become dislodged and “float away” to a vessel in the lungs, requiring an additional procedure to remove them.
Matthew Emmerling as a newborn in Cincinnati Children’s Hospital.
Most stents used to prop open blood vessels in infants and small children are designed to be implanted in the bile ducts of adult livers. “They work pretty well, otherwise we wouldn’t do it,” Dr. Beekman says. “But they’re not designed for blood vessels at all.” He recently implanted three stents in vessels in an infant’s heart, and a few days later, they filled with blood clots—a life-threatening crisis that was resolved with blood thinners, he says.
Drugs also pose a dilemma. Children younger than 7 or 8 typically need medication in liquid, not pill, form. But many common heart drugs, such as beta blockers and ACE-inhibitors, aren’t readily available as liquids and have to be specially prepared.
Devising medication regimens for children also can be difficult. Doses are often based on a child’s weight and are typically calculated from standard doses given to adults, a strategy whose safety and efficacy don’t have substantial backing in scientific studies. Pediatric cardiologists have to deal with patients ranging from “a 400-gram infant born prematurely all the way to a 400[-pound] extremely obese adolescent,” says Marlene Miller, a doctor at Johns Hopkins Children’s Center in Baltimore, who led a recently published study of heart-drug medical errors in children. “That’s enormous variation. Adults don’t vary that much in size.”
Among the few devices approved for pediatric heart patients is a plug for such small hole-in-the-heart malformations as septal defects. Now a heart valve, being developed by Medtronic Inc. for both children and adults with congenital heart defects, is poised for regulatory approval in the U.S. An FDA advisory panel last month unanimously recommended its approval based on data from 99 patients, including several children between 7 and 12 years old. The device, implanted via a catheter and a balloon instead of open-heart surgery, is designed to replace the pulmonary valve, the gateway for blood to get to the lungs for oxygen. Different balloon sizes enable doctors to use it in children and adults.
The FDA panel voiced concern about the tendency of the device to fracture in a small number of cases and put restrictions on its recommendation. But the panel said it was impressed by the likelihood the device would enable many people to delay or avoid repeated open-heart surgeries. The device isn’t perfect and not designed for very young children, says Dr. Lock of Children’s Hospital Boston. Still, he says, assuming the FDA approves the valve, “it’s going to change the field and improve the lives of children and young adults with heart disease.” Dr. Lock says he has no financial relationship with Medtronic.
Recent studies also are focusing on treating young heart patients. At the NIH, officials are preparing to report the results of two major clinical trials comparing treatments for children born with just one ventricle, or pumping chamber, instead of two. One study compares two different surgical approaches; the other looks at whether giving the ACE-inhibitor enalapril to such infants on top of other medicines improves their outcomes.
The national registry of catheter-based procedures being launched by the American College of Cardiology, called Impact, aims to serve as a resource for pediatric doctors in the same way that adult-patient registries help cardiologists guide and improve their treatment.
“We hope Impact will become the standard by which safety and quality are judged for hospitals” that treat congenital defects, says Gerard R. Martin, co-director of the Children’s National Heart Institute in Washington, who heads the registry effort. Dr. Martin expects the registry will eventually enable doctors to see whether surgery or less-invasive catheter-based procedures achieve better results for a variety of heart defects, including the aortic-valve malformation that Matthew Emmerling had.
Leaking Aortic Valves
By inserting the kidney balloon into Matthew’s heart, Dr. Beekman tore open the tiny leaflets in the aortic valve that were fused together and blocked blood flow from the heart to the rest of the body. Even when this procedure is successful, the valve typically leaks, causing blood to flow backward into the pumping chamber. But Dr. Beekman says he was disappointed to find more leaking in Matthew’s heart than he had expected. “How can anybody expect perfect results from devices that were never designed and developed for these uses?” he asks.
Dr. Beekman says he told Matthew’s parents after the procedure that the infant would likely need another treatment soon, perhaps even open-heart surgery, to address the problem. But a checkup after several months revealed that the leak had stabilized and now, three and a half years later, Matthew—whose story was reported in the local Cincinnati press—is a healthy, active child whose heart is working effectively.
“He’s a monster,” says his father, Joe Emmerling, a customer-service representative at Hewlett-Packard Co. “I’m just thrilled that they were able to do what they did without open-heart surgery. That doesn’t come from the manufacturer; that comes from doctor know-how.”
Matthew isn’t out of the woods yet. He’ll eventually need surgery to replace the defective valve—even an approved pediatric balloon wouldn’t have spared him from that. But the kidney balloon “allowed him to skip several early childhood surgeries,” says Dr. Beekman. He is hoping that since there are no replacement valves available designed for young children, Matthew can avoid surgery until he grows.
This Article proves that as parents we need to be more active in bringing CHD to the attention to the law makers and raise money that scientist can create devises that work for our children-Roman's mom
Matthew Emmerling was just three days old and barely home from the hospital when his mother noticed his feet were unusually cold to the touch. Hours later, doctors determined that he was born with a critically narrowed aortic valve that prevented his heart from getting an adequate supply of blood to the rest of his body. He was in shock, and without quick intervention, his life was in danger.
View SlideshowAndrew Spear for The Wall Street Journal
Joe Emmerling and sons Matthew (left), 3 years old, who was born with a heart defect and is now healthy and active, and Daniel, 5.
To avoid risky open-heart surgery on the infant, doctors figured they could thread a tiny balloon into his heart and inflate it to stretch open the obstructed valve. The problem was that a balloon designed and approved to treat heart defects in patients as tiny as Matthew didn’t exist. Instead, Robert Beekman, a pediatric cardiologist at Cincinnati Children’s Hospital Medical Center, chose an angioplasty balloon that normally serves a different function: opening up clogged kidney arteries in adults.
The adult kidney balloon “is the right size for a newborn’s aortic valve, so we use it,” Dr. Beekman says. But, he adds, using a device in small children that wasn’t designed for that purpose puts them at heightened risk for procedural complications and medical errors.
Matthew’s situation highlights an enduring reality for children born with life-threatening heart defects: Hardly any of the myriad drugs and devices developed for the multibillion-dollar market for cardiovascular disease are designed with kids in mind. Children with heart disease represent too small a segment of that market to justify companies’ investing the time and resources needed to develop specialized products. Litigation worries over products intended for children—and the challenge of conducting clinical trials for treatments often administered to newborns—are other impediments.
It all adds up to what Jim Lock, chief of cardiology at Children’s Hospital Boston, calls a “profitability gap” between the market for children and the much-larger business of treating adults with heart disease. Matthew Emmerling’s doctors had to use an adult-size kidney balloon to open his aortic valve when he was a few days old. The result is that in treating some of medicine’s sickest patients, physicians often must rely on instinct, back-of-the-envelope calculations and anecdotal case reports swapped at medical meetings, instead of the more rigorous clinical evidence that underpins much adult heart treatment.
In a study presented last March at a meeting of the American College of Cardiology, Dr. Beekman and his colleagues found that 63% of 473 patients treated at Cincinnati Children’s Hospital between 2005 and 2008 got devices that hadn’t received regulatory approval for the purposes for which doctors used them. Doctors at Children’s Hospital Boston say that of some 1,000 tubular devices—known as stents—that doctors put in vessels in children’s hearts in recent years, not a single case involved a use that had been approved or evaluated by the Food and Drug Administration.
Some recent efforts aim to change that. An FDA advisory panel recently recommended approval of a heart valve that could be used in children. Various clinical trials, sponsored by the National Institutes of Health and other groups, aim to compare different surgical approaches and different drug regimens in children with congenital heart defects. And the American College of Cardiology next month plans to launch a registry that will allow doctors to compare the outcomes of catheter-based procedures done on children at centers around the U.S.
“We adopt things known to work in adult patients in pediatrics because we’re sort of desperate,” says Gail Pearson, a pediatric cardiologist and medical officer for the Pediatric Heart Network, a clinical-trial cooperative of children’s medical centers sponsored by the NIH’s National Heart, Lung and Blood Institute in Bethesda, Md. “We are trying to move more toward a paradigm where the norm would be if you’re a child with complex clinical heart disease, your care would be guided by a research protocol” based on studies of children, she says.
About one in 100 children is born with a heart defect, which in the U.S. translates to between 35,000 and 40,000 births annually. Some of the malformations heal on their own, but in thousands of cases, either open-heart surgery or less-invasive catheterization procedures are required to repair the problem and often to save the child’s life.
Adapting Adult Devices
While heart surgeons and cardiologists who perform catheter-based procedures have proven remarkably adept at adapting adult devices for use in children, their patients are nonetheless at heightened risk of complications. Devices that don’t fit properly in a blood vessel can become dislodged and “float away” to a vessel in the lungs, requiring an additional procedure to remove them.
Matthew Emmerling as a newborn in Cincinnati Children’s Hospital.
Most stents used to prop open blood vessels in infants and small children are designed to be implanted in the bile ducts of adult livers. “They work pretty well, otherwise we wouldn’t do it,” Dr. Beekman says. “But they’re not designed for blood vessels at all.” He recently implanted three stents in vessels in an infant’s heart, and a few days later, they filled with blood clots—a life-threatening crisis that was resolved with blood thinners, he says.
Drugs also pose a dilemma. Children younger than 7 or 8 typically need medication in liquid, not pill, form. But many common heart drugs, such as beta blockers and ACE-inhibitors, aren’t readily available as liquids and have to be specially prepared.
Devising medication regimens for children also can be difficult. Doses are often based on a child’s weight and are typically calculated from standard doses given to adults, a strategy whose safety and efficacy don’t have substantial backing in scientific studies. Pediatric cardiologists have to deal with patients ranging from “a 400-gram infant born prematurely all the way to a 400[-pound] extremely obese adolescent,” says Marlene Miller, a doctor at Johns Hopkins Children’s Center in Baltimore, who led a recently published study of heart-drug medical errors in children. “That’s enormous variation. Adults don’t vary that much in size.”
Among the few devices approved for pediatric heart patients is a plug for such small hole-in-the-heart malformations as septal defects. Now a heart valve, being developed by Medtronic Inc. for both children and adults with congenital heart defects, is poised for regulatory approval in the U.S. An FDA advisory panel last month unanimously recommended its approval based on data from 99 patients, including several children between 7 and 12 years old. The device, implanted via a catheter and a balloon instead of open-heart surgery, is designed to replace the pulmonary valve, the gateway for blood to get to the lungs for oxygen. Different balloon sizes enable doctors to use it in children and adults.
The FDA panel voiced concern about the tendency of the device to fracture in a small number of cases and put restrictions on its recommendation. But the panel said it was impressed by the likelihood the device would enable many people to delay or avoid repeated open-heart surgeries. The device isn’t perfect and not designed for very young children, says Dr. Lock of Children’s Hospital Boston. Still, he says, assuming the FDA approves the valve, “it’s going to change the field and improve the lives of children and young adults with heart disease.” Dr. Lock says he has no financial relationship with Medtronic.
Recent studies also are focusing on treating young heart patients. At the NIH, officials are preparing to report the results of two major clinical trials comparing treatments for children born with just one ventricle, or pumping chamber, instead of two. One study compares two different surgical approaches; the other looks at whether giving the ACE-inhibitor enalapril to such infants on top of other medicines improves their outcomes.
The national registry of catheter-based procedures being launched by the American College of Cardiology, called Impact, aims to serve as a resource for pediatric doctors in the same way that adult-patient registries help cardiologists guide and improve their treatment.
“We hope Impact will become the standard by which safety and quality are judged for hospitals” that treat congenital defects, says Gerard R. Martin, co-director of the Children’s National Heart Institute in Washington, who heads the registry effort. Dr. Martin expects the registry will eventually enable doctors to see whether surgery or less-invasive catheter-based procedures achieve better results for a variety of heart defects, including the aortic-valve malformation that Matthew Emmerling had.
Leaking Aortic Valves
By inserting the kidney balloon into Matthew’s heart, Dr. Beekman tore open the tiny leaflets in the aortic valve that were fused together and blocked blood flow from the heart to the rest of the body. Even when this procedure is successful, the valve typically leaks, causing blood to flow backward into the pumping chamber. But Dr. Beekman says he was disappointed to find more leaking in Matthew’s heart than he had expected. “How can anybody expect perfect results from devices that were never designed and developed for these uses?” he asks.
Dr. Beekman says he told Matthew’s parents after the procedure that the infant would likely need another treatment soon, perhaps even open-heart surgery, to address the problem. But a checkup after several months revealed that the leak had stabilized and now, three and a half years later, Matthew—whose story was reported in the local Cincinnati press—is a healthy, active child whose heart is working effectively.
“He’s a monster,” says his father, Joe Emmerling, a customer-service representative at Hewlett-Packard Co. “I’m just thrilled that they were able to do what they did without open-heart surgery. That doesn’t come from the manufacturer; that comes from doctor know-how.”
Matthew isn’t out of the woods yet. He’ll eventually need surgery to replace the defective valve—even an approved pediatric balloon wouldn’t have spared him from that. But the kidney balloon “allowed him to skip several early childhood surgeries,” says Dr. Beekman. He is hoping that since there are no replacement valves available designed for young children, Matthew can avoid surgery until he grows.
This Article proves that as parents we need to be more active in bringing CHD to the attention to the law makers and raise money that scientist can create devises that work for our children-Roman's mom
Wednesday, July 29, 2009
Thursday, May 21, 2009
Being Two
A picture say a thousand words. Two year olds are so much fun at least most of the time until they learn to have a tantrum. Roman seems to also have a huge fascination with other peoples shoes. The photo above is of him walking in his grandpa Nerney's shoes. It was so funny to watch him walk in the shoes because they are bigger than the average persons shoes. My dad is 6 foot 6. Roman even wants to wear his crocs to bed. He is really starting to talk. New words are Come on, guy, cat, dog, owl, don't know, milk, bowl, bed, night night, go, toes, eye, and nose. Oh, did I tell you he wants to do everything for himself even though he can't do it all by himself. His favorited tv shows are Mickey Mouse Clubhouse, The movers, and Yabba Gabba or something like that.Friday, February 20, 2009
You Gotta Believe!
Roman the last 2 years with you in our lives has been the best. When the doctor told me that there was something wrong with your heart. I just had to believe that everything was going to be OK. When the doctor said, "You can still abort this baby." I couldn't! I had to believe. If I had only one minute, three months, two years, or a lifetime, I had to believe. We spent so many nights on our knees praying that everything would be allright. You have changed our lives forever and changed our hearts too. Thank you for being apart of our family.
To play this and hear the music you will have to go to the bottom of the page and pause the playlist music. Enjoy!
To play this and hear the music you will have to go to the bottom of the page and pause the playlist music. Enjoy!
Wednesday, February 11, 2009
At the Capitol
This week is Congenital Heart Disease Awareness week, and to make it official our Governor Sunny Purdue signed it into law. Hopefully, this will bring more attention to this Disease that is the number #1 birth defect. Hopefully than researchers will be able to get more money, so that they can discover why this is happening to our babies. Please check out the new website created by Tommy Wood and his family to help spread awareness to this cause. You can get there by going to the We Support section on this blog and clicking on Congenital Heart Disease Awareness Org. Tommy is also in the process of trying to make a documentary that would help people understand that they can have hope. That link is also posted on the side under Selma. It is only through us parents that a difference is going to be made. Thanks Tommy for making a difference!!!!!
Thursday, December 4, 2008
Roman's Blanket Project
Last night, children ages 8-11 gathered to make blankets for the cardiac babies at Sibley Heart center. The children had a blast and felt rewarded in knowing they were doing something good for someone else. These blankets are just a start in a much larger project called Roman's Blanket Project. This project will not only provide baby blankets, but will also make burp clothes, pillowcases, crayons and coloring books, and hopefully a list of needed items. Today we delivered snacks for the parents lounge, cookies for the ICU waiting area, and 110 of the 300 blankets that were made. We also delivered 50 coloring books and 50 crayons.This project has been made possible by bake sales and donations given from the faculty members of the Georgia Tech Business School, the Homework Center, and the Church of Jesus Christ of Latter-Day Saints.
Sunday, November 16, 2008
Wednesday, October 8, 2008
A Must See!
For all of you Heart moms, this is a must see movie. It tells the story of how they discovered/learned how to repair the heart. I am so thankful for people like this who feel compelled to find the answer to problems and sacrifice themselves in the process.
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