Doctors Healthlife Stories

I am blessed to have had the opportunity to speak to such amazing heart parents, friends and family. It was an amazing night for both our warriors and our Angels to be celebrated while bringing to attention what is really happening in the Congenital Heart Defect Community. Finally, we have an organization that cares about not only the survivors but the Angels as well. Were rather tired of simply being handed a book, How to grieve and sent on our way.
It was truly a beautiful moment to watch children show each other their scars so proudly and play together. It really brought joy to my heart.
We had families whos children had transplants, operations and those whose beautiful sons and daughters were taken too soon. There were tears shed, candles lit in honor of our children and our friends children. We shared the stories of Cora McCormick, Pierce Helms and others.
The Angel and Warrior videos that were shown are being uploaded to YouTube now and will be posted in the AM. (There rather big files).
I am so honored to be a part of something that my heart says is what we need and we arent addressing. Many of the Angel parents feel alienated by groups whose focus is only better options instead of preventing death. Many of the warriors need more help than a few meetings. It is our goal to provide more options and help for both types, warriors and Angels that simply are not available.
Ill share with you my speech from this evening.
Good Evening and Welcome, Thank you all for attending the innagural 1st Annual Denvers Day for Hearts. My name is Levi Beers, less than 4 months ago my 1st born, a son named Aiden, succumb to the very thing we all want to do more about: Congenital Heart Defects. Tonight it brings me great joy that Denver and over 100 cities across the world are striving to do more for the families, the children and the adults who courageously fight living with a CHD and for us to remember those we have lost too soon.
Stepping back one year from this moment my wife and I were filled with the excitement of knowing we were with child until those words, There is something wrong with your sons heart brought shock waves of emotions, pain and fear of the unknown. Every year 40,000 families face this same reality: their child has a heart defect. Tonight we have the honor of having a some of those families with us.
It is the goal of this Day for Hearts from each year herein on February 13th to bring more awareness to the general public about the #1 birth defect and the #1 cause of infant death in the United States as well as to bring more research, support and options for the nearly 2 million Americans living and affected by Congenital Heart Defects along with their families.
Since the first Blue Baby operation was performed by Dr. Alfred Blalock, Vivien Thomas and Dr. Hellen Taussig in 1944 many advancements have been made improving the quality of life for many CHDers. In the last decade mortality rates for CHDs declined by almost 30%. Still, more than 4,000 children each year will never see their first birthday. In 2004 the National Center for Health Statistics reported 5,810 newborns died from complications due to Congenital Heart Defects more than half of which were babies whose parents never knew their child was anything but healthy.
Newborn Screening Guidelines within the United States vary state by state. There are core conditions however that are checked for every baby born in our country, some of these include: Maple Syrup Urine Disease (affecting less than 1 in 100,000 newborns), Congenital Adrenal Hyperplasia (affecting 1 in 25,000 newborns) and Congenital Deafness (affecting 1 in 5,000 newborns) however no state routinely screens all newborns for Congenital Heart Defects, affecting approximately 1 in 100 newborn children.
Currently the only way CHDs are identified prenatally are by ultrasound scans during pregnancy, a 1998 study from Southwestern Medical School in Texas reported that only 1/4 of heart defects are identified prenatally. Many centralized hospital studies around the country state that neonatal examination within the first 3 weeks of life fails to detect more than half of newborns that have a Congenital Heart Defect when the testing method is a simple stethoscope listening for a heart murmur. In 1944, both Dr. Blalock and Dr. Taussig knew that blue oxygen deprived newborns had a heart malformations. In 2006 Norwegian doctors published one of the largest clinical trials using Pulse Oximetry and checked half of all babies born in the country. The results: Pulse Oximetry detected 3/4 of critical heart defects that had been previously missed. For every 2,000 newborns screened, they estimated 1 childs life was saved. The cost-benefit ratio compared favorably to their current practices of newborn screening for other less occurring defects. January 2007 Swedish doctors published an even more methodical study of nearly 40,000 newborns and showed that oximetry entirely eliminated death from missed critical heart defects.
There are 35 identified Congenital Heart Defects ranging from simple to severe, 51 surgical operations to repair them and 4 types of catheterization interventions in use today. Yet for so many children its not enough to save their precious life.
Despite the prevalence and seriousness of Congenital Heart Defects and organizations like the National Heart Lung and Blood Institute stating s are a serious and underappreciated global health problem government funding is nearly non-existant. Of every dollar the U.S. government spends on medical funding a fraction of a penny is directed towards CHD research, the American Heart Association directs one penny for every dollar donated to CHD research. Its a fact that nearly twice as many children die from CHDs in the United States every year than all forms of childhood cancers combined. Yet funding for pediatric cancer research is 5 times higher than funding for CHD research. The cost of inpatient surgery to repair these CHDs currently exceeds $2.2 billion dollars per year. We need less invasive surgical options and better long term prognosis for our children to give them the lives we want them to have.
I know from experience that hearing Your child has a heart problem completely changes a family forever, there are many teary nights, many of us plead with God let it be us, not them. We sit and await surgery day with high expectations and the greatest feeling of fear we will ever have. 1 family out of 10 will be sent home with a book, How to deal with grief instead of taking their child home. For those parents without insurance their lives with financially never be the same reguardless of the outcome. Surgeries can cost from $100,000 to $1,000,000 or more. Depending on where a familiy lives determines the type of care they can receive, here we are lucky to have Childrens Hospital of Denver with surgeons like Dr. Cambell and Dr. Mitchell, who have together performed almost 10,000 surgeries in their careers. For others they must fly thousands of miles to a medical facility capable of correctly diagnosing and repairing their childs heart defect.
Over the last few months since my son has passed away Ive been busy working to bring more to the Congenital Heart Defect Community and individual families across the country. On December 6th of 2009 I had heard a heart breaking story, a mother named Kristine was at home with her new baby and her husband. Late one night little Cora woke up hungry and Kristine began feeding her. Almost immediately Kristine knew something was wrong, rushing to the hospital with police escort it was too late, little Cora had been taken to her heavenly home because of an undiagnosed heart defect. I reached out to Kristine and have been friends with her ever since. Kristine comes from a small town when she asked her OBGYN how could this be prevented, she was told there is no way to diagnose a heart defect that it rarely ever happens. Proof that even some within the medical community need up to date on even the most basic practices of pediatric cardiology. Gabriels Gift who has sponsored this great event provided Kristine with free Mental Health Support Services a thousand miles away, because being sent home with a book on grieving just isnt enough.
Last month I came across a mother who had been in the Cardiac Intensive Care Unit in Little Rock for nearly a month. Her son Pierce had a severe congenital heart defect, while awaiting transplantation his stats dropped so low they had to immediately perform surgery on his failing heart. Pierce held on for many days after but finally succumb to his heart defect. While they were in the hospital Saving Little Hearts was able to provide all the families in the Little Rock CICU including Pierce and his mother with Care Bags, items which no one wants to leave their child to get but needs desperately.
At the end of January this year I wrote Governor Ritter a personal letter with a request, have Colorado proclaim February 7th 14th as Congenital Heart Defect Awareness Week in the State of Colorado. I was told by his staff that it was too close to get something like that. Four days later I received a Proclamation from Governor Ritter.
Congenital Heart Defects are the most common birth defect and are the leading cause of birth-defect related death. Individuals born with CHD are threatened by death due to the severity of the defect, belated detection, lack of donor hearts or the failure of medical intervention. More than 40,000 infants are born each year with heart defects in the United States. Early diagnosis and treatment of CHD may lead to longer and more active lives for thousands of children and adults diagnosed with this devastating defect. Increased awareness will save lives through an improved probability of early detection. Bill Ritter, January 26th 2010.
By combining efforts and doing more we can really make an impact on not only the families in Denver that face a Congenital Heart Defect Diagnosis we can also help the families of the 1 million children born worldwide every year with a heart defect. Tonight we gather for our children, here or in heaven and the millions affected just the same.

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