As part of CHD Awareness Week in Michigan, I plan to hand out
flyers with the statement below. I thought I would share it with
all of you. I know you are aware of CHDs through Izzy, but do you
really know how common they are or how underfunded the research
is?
On an Izzy note, she is doing so-so. She has been congested and snotty since the weekend, so she is not eating properly of course.
Mel
It is February, the month for hearts. As a heart mom, I’ve learned in the last year that awareness for congenital heart defects is much lower than its prominence in our society. Did you know that about 1 million Americans have a congenital heart defect and that approximately 35,000 babies are born with a defect each year? As such, the much needed research funding is not commensurate with the problem. My personal view is that people are not aware of congenital heart defects and the toll they take on our society because the people suffering and dying are babies. Babies can’t talk. They haven’t lived long enough to know they are allowed to “Make A Wish” because they are so sick. That makes it my job, as a heart mom, to try to bring awareness to this problem.
Did you know that congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life? Did you know that nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined, yet the funding for pediatric cancer research is five times greater? While I don't want to take away funding for research to fix any condition that kills children, but I think funding should be increased for CHDs to match its prominence in society.
All congenital heart defects are not life-threatening and life-long illnesses, yet every parent knows hearing those words would be devastating. When I was first told that my daughter had heart defects and the doctor attempted to show them to me on the ultrasound screen (I was 20 weeks pregnant), the only thing I could think about was not letting them see me cry as my insides were exploding. As soon as they shut me in the consultation room, the floodgate was released. At that time, I didn’t even know how bad it really was going to be. Just imagine for a second what that would feel like. Or even worse, imagine you were told this news the morning you were going to bring your newborn home or two days after you bring your baby home he or she turns blue on you. Many parents learn of heart defects when their babies are a couple of days old. They don’t have the luxury of learning about the disease in advance and they watch, stunned, as their baby is wheeled off for tests or surgery.
Doctors are trying to find ways to know if a baby has a heart defect when they are born, such as a heel poke. Right now, they have to do an echocardiogram and that is not cost-feasible for all babies. Only research funding will help doctors give parents time and give the babies an opportunity to survive and thrive. Not all hospitals are capable of helping a cardiac baby. If you are unlucky enough to live in a place without those facilities close to you, by the time the diagnosis is finalized, you may be too far away from the correct facility to save the baby. My daughter had her first heart catheterization at 24-hours old. If we didn’t have the diagnosis in advance, that probably would not have been possible because we would have been at the wrong hospital (that and if they hadn’t know of her problems, they would have declared her healthy—she looked it). After the cath, my daughter was originally scheduled for her first major heart surgery when she was 3-days old. I wasn’t even released from the hospital yet. Luckily, we knew in advance, so I switched hospitals before she was born so that I could see her when she was at Children's.
Even after the defect is identified, the therapies for these babies are extremely invasive. At 10-months old, my daughter has had three heart catheterizations, one major heart surgery, and been in the hospital for a total of at least three months. She is scheduled for another heart catheterization on February 13, 2009, at which time they will determine when her next open-heart surgery will be. While my daughter’s condition is fairly rare (0.007% of heart defects are like hers), open heart surgery and catheterizations are par for the course with these babies. Can you imagine the difficulty of placing an instrument in the groin of an infant and going through teeny tiny vessels just to get a good look at the heart and circulatory system? It is extremely scary to think about as a parent, but the only real way the doctors can diagnose and see what they need to see. Research is needed to find a less invasive way to look at the babies.
Surgeries are also necessary many times for these babies. In the case of my daughter, they will likely use a gortex tube or graft from another baby to connect her pulmonary arteries to her heart during her next surgery. That will not grow with her, meaning she will have to do this all over again every couple of years, unless new technologies can be found. My daughter’s surgeon is working on methods to grow replacement conduits and valves for these heart babies so that only one surgery is necessary and the implants will grow with the child. Research funding is necessary for that and similar research.
Other children have to have their entire heart re-made in multiple-step surgeries. These surgeries are a huge leap that was made possible by research. Ten to fifteen years ago, these children had the option of a heart transplant or compassionate care. Donor hearts are difficult to come by for adults, imagine how hard it is for babies. Compassionate care was the only real choice. Still, today, too many babies die because of congenital heart defects. Research in all areas is necessary and funding is the only way to do it.
While I don’t expect you to necessarily donate to CHD research, I do want you all to be aware of these wonderful, amazing children. Awareness is the first step to finding better, less invasive therapies. So, on Congenital Heart Defect Awareness Day, also known as Valentine’s Day, think about your heart and the hearts of those you love, then think about what you would do if any of those hearts were compromised. For further information, see the following websites:
http://www.americanheart.org/presenter.jhtml?identifier=12012 (Source of the facts cited here)
http://www.congenitalheartdefects.com/
On an Izzy note, she is doing so-so. She has been congested and snotty since the weekend, so she is not eating properly of course.
Mel
It is February, the month for hearts. As a heart mom, I’ve learned in the last year that awareness for congenital heart defects is much lower than its prominence in our society. Did you know that about 1 million Americans have a congenital heart defect and that approximately 35,000 babies are born with a defect each year? As such, the much needed research funding is not commensurate with the problem. My personal view is that people are not aware of congenital heart defects and the toll they take on our society because the people suffering and dying are babies. Babies can’t talk. They haven’t lived long enough to know they are allowed to “Make A Wish” because they are so sick. That makes it my job, as a heart mom, to try to bring awareness to this problem.
Did you know that congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life? Did you know that nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined, yet the funding for pediatric cancer research is five times greater? While I don't want to take away funding for research to fix any condition that kills children, but I think funding should be increased for CHDs to match its prominence in society.
All congenital heart defects are not life-threatening and life-long illnesses, yet every parent knows hearing those words would be devastating. When I was first told that my daughter had heart defects and the doctor attempted to show them to me on the ultrasound screen (I was 20 weeks pregnant), the only thing I could think about was not letting them see me cry as my insides were exploding. As soon as they shut me in the consultation room, the floodgate was released. At that time, I didn’t even know how bad it really was going to be. Just imagine for a second what that would feel like. Or even worse, imagine you were told this news the morning you were going to bring your newborn home or two days after you bring your baby home he or she turns blue on you. Many parents learn of heart defects when their babies are a couple of days old. They don’t have the luxury of learning about the disease in advance and they watch, stunned, as their baby is wheeled off for tests or surgery.
Doctors are trying to find ways to know if a baby has a heart defect when they are born, such as a heel poke. Right now, they have to do an echocardiogram and that is not cost-feasible for all babies. Only research funding will help doctors give parents time and give the babies an opportunity to survive and thrive. Not all hospitals are capable of helping a cardiac baby. If you are unlucky enough to live in a place without those facilities close to you, by the time the diagnosis is finalized, you may be too far away from the correct facility to save the baby. My daughter had her first heart catheterization at 24-hours old. If we didn’t have the diagnosis in advance, that probably would not have been possible because we would have been at the wrong hospital (that and if they hadn’t know of her problems, they would have declared her healthy—she looked it). After the cath, my daughter was originally scheduled for her first major heart surgery when she was 3-days old. I wasn’t even released from the hospital yet. Luckily, we knew in advance, so I switched hospitals before she was born so that I could see her when she was at Children's.
Even after the defect is identified, the therapies for these babies are extremely invasive. At 10-months old, my daughter has had three heart catheterizations, one major heart surgery, and been in the hospital for a total of at least three months. She is scheduled for another heart catheterization on February 13, 2009, at which time they will determine when her next open-heart surgery will be. While my daughter’s condition is fairly rare (0.007% of heart defects are like hers), open heart surgery and catheterizations are par for the course with these babies. Can you imagine the difficulty of placing an instrument in the groin of an infant and going through teeny tiny vessels just to get a good look at the heart and circulatory system? It is extremely scary to think about as a parent, but the only real way the doctors can diagnose and see what they need to see. Research is needed to find a less invasive way to look at the babies.
Surgeries are also necessary many times for these babies. In the case of my daughter, they will likely use a gortex tube or graft from another baby to connect her pulmonary arteries to her heart during her next surgery. That will not grow with her, meaning she will have to do this all over again every couple of years, unless new technologies can be found. My daughter’s surgeon is working on methods to grow replacement conduits and valves for these heart babies so that only one surgery is necessary and the implants will grow with the child. Research funding is necessary for that and similar research.
Other children have to have their entire heart re-made in multiple-step surgeries. These surgeries are a huge leap that was made possible by research. Ten to fifteen years ago, these children had the option of a heart transplant or compassionate care. Donor hearts are difficult to come by for adults, imagine how hard it is for babies. Compassionate care was the only real choice. Still, today, too many babies die because of congenital heart defects. Research in all areas is necessary and funding is the only way to do it.
While I don’t expect you to necessarily donate to CHD research, I do want you all to be aware of these wonderful, amazing children. Awareness is the first step to finding better, less invasive therapies. So, on Congenital Heart Defect Awareness Day, also known as Valentine’s Day, think about your heart and the hearts of those you love, then think about what you would do if any of those hearts were compromised. For further information, see the following websites:
http://www.americanheart.org/presenter.jhtml?identifier=12012 (Source of the facts cited here)
http://www.congenitalheartdefects.com/
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