For years GE has been working on something that will revolutionize medicine as we know it today. From unidentified heart defects, missed tumors, blocked intestines – you name it – Vscan will find it. The General Electric Vscan is now being sold for $7,600 per unit as opposed to $100,000 – $115,000 for a ultrasound machine capable of the same technology. It was a dream for the CHD community to make sure every child is scanned – and while Pulse Oximetry is a MUCH needed beginning we can move that even further by identifying what type of heart defect a child or adult has at a VERY low cost to the patient and insurance. Check out the following video and the links below to learn more.

Aiden’s Angels, an organization founded by myself and my wife Tracy are going to be purchasing these devices worldwide to give as many children a chance at a beautiful life as we can.

Visit the GE Vscan Website to learn more or purchase one for your practice. Visit GE’s HealthyImagination Vscan Website by clicking here.

In honor of Congenital Heart Defect Awareness Week, I am sharing a must see, seriously fantastic, short and easy to understand video I recently came across explaining heart anatomy and circulation!

It is beneficial for everyone that has heart, love’s their heart and/or love’s someone with a broken heart.  

The heart is amazing!

Did you know that your heart beats about 100,000 times per day, pumping 2,000 gallons of blood through 60,000 miles of a network of blood vessels in your body!!! It is incredible that such an organ exists and functions and mind boggling that each one of us living on the face of the earth has one!

I have been in the CHD world for going on two years now and it is the best explanation on the heart I have seen.  As new parents thrown into the world of CHD you try to understand all the lingo, the anatomy of the heart and how all the parts work together.  This video is great for that!  It helps to put all the pieces together in your mind.  And even if you are not dealing with CHD you have a heart so it still pertains to you.  Click on link below to see: 

The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health, has awarded four contracts totaling $23.6 million to begin preclinical testing of devices to help children born with congenital heart defects or those who develop heart failure. The four-year program is called Pumps for Kids, Infants, and Neonates (PumpKIN).

Each year in the United States, nearly 1,800 infants die as a result of congenital heart defects and another 350 develop heart disease, which leads to heart failure for many. Approximately 60 infants and children under 5 years old who are placed on the heart transplant waiting list die each year before receiving one. Mechanically assisted circulatory support could be used to sustain these young patients as they seek to recover or wait to receive a heart transplant.

“This research seeks to develop technologies to expand life-saving options for infants and children born with congenital heart defects or those who develop heart failure,” said NHLBI Acting Director Susan B. Shurin, M.D., a pediatrician. “The NHLBI is committed to saving the lives of our youngest patients. Well-designed circulatory support devices are expected to substantially improve the outcomes of the infants and young children who need them as they seek to recover or wait to receive a heart transplant.”

The options for chronic circulatory support devices for infants and young children are limited, and all have substantial risks for serious adverse events such as infection, stroke, and device failure. With this in mind, the NHLBI launched the Pediatric Circulatory Support Program in 2004 by funding the development of five novel circulatory support devices for infants and young children with congenital and acquired cardiovascular disease.

The PumpKIN program is the next phase of NHLBI support for the development and clinical realization of these devices. The program’s goal is to complete the needed animal studies and other tests in artificial environments for the most promising devices in order to gain approval from the FDA to begin clinical testing.

Devices in the program will provide suitable circulatory support for newborns, older infants, and children less than 55 pounds who experience heart failure due to congenital and acquired cardiovascular disease. They are designed to supply adequate blood flow to prevent organ damage while minimizing the risk of blood vessel damage, infection, breakdown of red blood cells, excessive bleeding, brain damage, and dangerous blood clots. The devices are intended to support circulation in pediatric patients for one to six months, be sufficiently small and reasonably portable, and be able to be routinely positioned and functioning in less than one hour, among other specifications.

The program will testventricular assist devices (VADs) and advanced extracorporeal membrane oxygenator (ECMO) devices. The VADs in the PumpKIN program are very small rotary pumps which are implanted to provide circulatory support for extended periods of use. They work by drawing blood from the heart and pumping it to the body. ECMO devices circulate and supply oxygen to the blood, and are commonly used for patients who need both heart and lung support. For ECMO devices, tubes connecting the patient to the device are placed directly into large blood vessels near the base of the neck. Blood is drawn from the right side of the heart, pumped through the oxygenator, and then returned to the body on the left side of the heart so the oxygen-rich blood can be delivered throughout the body.

The contractors will conduct all preclinical animal testing and analysis in the first three years of the contract. During the third year, they will partner with a data coordinating center (the contract for which is still to be awarded) to complete the necessary activities to seek FDA approval to begin the clinical trial.

PumpKIN contractors are Harvey S. Borovetz, Ph.D., University of Pittsburgh; Mark Gartner, Ph.D., Ension, Inc., Pittsburgh, Pa.; Bartley P. Griffith, M.D., University of Maryland, Baltimore; and Robert Jarvik, M.D., Jarvik Heart, Inc., New York, N.Y.

To arrange an interview with an NHLBI spokesperson, please contact the NHLBI Communications Office at (301) 496-4236 or email nhlbi_news@nhlbi.nih.gov nhlbi_news@nhlbi.nih.gov. To arrange an interview with Dr. Borovetz, please contact Anita Srikameswaran, M.D. at (412) 578-9193. To arrange an interview with Dr. Gartner, please call (412) 828-5209. To arrange an interview with Dr. Griffith, please call (410) 706-7820. To arrange an interview with Dr. Jarvik, please call (212) 397-3911.

Part of the National Institutes of Health, the National Heart, Lung, and Blood Institute (NHLBI) plans, conducts, and supports research related to the causes, prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood diseases; and sleep disorders. The Institute also administers national health education campaigns on women and heart disease, healthy weight for children, and other topics. NHLBI press releases and other materials are available online at www.nhlbi.nih.gov http://www.nhlbi.nih.gov/.

The National Institutes of Health (NIH) — The Nation’s Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

• Contract Solicitation for PumpKIN: https://www.fbo.gov/index?s=opportunity&mode=form&tab=core&id=e83b8cfb01f6ea4c88656022f2ea1740&_cview=0&cck=1&au=&ck
• NHLBI Pediatric Heart Network: http://www.pediatricheartnetwork.com/
• What Are Congenital Heart Defects?: http://www.nhlbi.nih.gov/health/dci/Diseases/chd/chd_what.html
• What Is Cardiomyopathy?: http://www.nhlbi.nih.gov/health/dci/Diseases/cm/cm_what.html
• FDA Device Regulation and Guidance: http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/default.htm

Ten months ago I was being told that my local Hospital wasn’t equiped to do a C- section on me since my plattlets were low!! Great more stress and Just what i needed more worries.! Dr didn’t think that my little girl was ready to come out even though things were uncomfortable and that she was already a big baby everyone else said she would be fine if delivered then. It was finally decieded that on March 12 2009 we would be transported to Rush University!! Great almost two hours away my kids would be in Braidwood and I would be in Chicago. I wa waiting for the Ambulance to come so I called some people and one was my best friend he was so positive and caring. It was amazing. John was trying to get Mark to school and get my mom to our house so she could watch Lilly and be there when Mark got home. I thought this was the longest day of my life. The ambulance came around 0930 it was refreshing to see that the guys were so caring and comforting not to mention so funny but very proffesional!! I cried in my room enough and I was trying not to cry infront of these guys. We went through all the lights sierns were blarring weaving in and out of traffic hitting every bump!! There’s no way to miss the pot holes on the Illinois Exxpressways. We arrived at around 1115am and they were taking about the pizza place done the street wish i could of joined them but next time. Amazing all the test they did to make sure I could have surgery and the papers to sign. I cried John could not be in there when Kimmy was born. I really needed him but they said it would be ok it won’t take long and then we could see her in the nursery. At 1832 Kimberly Ann Hicks was born!! 10lbs 12oz 22inches! We went to see her in the NICU which my heart sunk! The nurse said that she was in the regular nursery for about two hours but a nurse heard something when she was breathing and that her O2 was low so she was shipped up there. I was still in my hospital bed and couldn’t comprehend what was happening!! We were there because of me I was the one who should of had problems not Kimmy! For the next two days she was holding her  own then all of a sudden she coded!! We didn’t know till the next day I wish they would of said something!! That made them realize that they could not monitor her like she needed so she was going to PICU.!! Before though we meet with Dr Polminokos Iknow I spelled it wrong. He is about six feet and had big hands!! How somone could be so delicate and have nerves of steel is awsome.Kimberly’s diagnoses was Aoritic and Subaortic Stenosis Severe Coarction of the aorta. Malaligned ventricular septal defect.Narrow complex tachycardia that required amiodarone infussion. March 31 2009 Kimbery had Arterial banding so she could come home for awhile. The plan was to let her grow some more before her open heart surgery!! She came home for about 2 months then on August 11 2009 She had Norwood Palliation and palliative Rastelli 6mmRV to PA Gore Tex conduit non valve. We were sent home in early September Kimmy went done to 8lbs 6oz and with a NG tube. She is labeled as Failure to Thrive but I think she will catch up. She’s doing good we just need to watch her O2 now because her conduit might of calcium build up in it!! We hope not we were planning on trying to have a somewhat mormal life but if not if that’s ok because we have Kimmy and we will make the best of it weither it’s Rush or Home!!

We were not aware of any of this we are very grateful that we were at such a wonderful hospital and thankful for the nurse we heard something and didn’t ignore it!

A few days ago I posted an article “Why aren’t we making progress in CHDs?” on my personal blog which covered some of the issues I feel are hindering us as a community from making the kind of impact we all want to make with Congenital Heart Defects. It is the goal of many to change the landscape of CHDs.

While the Centers for Diseases Control and the American Heart Association make Congenital Heart Defects sound like a leisurely stroll in the park, too many parents realize the seriousness in which our day to day lives are impacted. There are a wide array of congenital heart defects, totaling  35 known types. Kelly Manz, founder of CHD Babies has put together a very complete and easy to follow list of the types of Congenital Heart Defects as well as the different types of surgeries used to repair these defects. While some Congenital Heart Defects don’t require surgery, some do. Of the surgeries performed some children will lead very healthy lives with others will struggle with theirs for their entire life.

Even though it is my opinion and most likely the opinion of hundreds of thousands of people (if not millions) across the world that Congenital Heart Defects are an epidemic, there is MUCH HOPE. The stories of CHD families and CHD Adults across the world have been popping up left and right recently, there is a fire to spread these stories and to create awareness for our cause. I don’t believe there is a single parent of a CHD child or someone with a CHD themselves that don’t always have it prying on their minds. We know at any point in time we can lose the ones we love, which is why I believe heart parents and patients are among the strongest of people and the most caring of our world.

I am seeing more and more awareness efforts being put forth by those affected with Congenital Heart Defects as well as others that aren’t affected starting to “get it”. Jim Ferretti, Chapter President of It’s My Heart in Oklahoma had been able to attract nearly 1,000 members to “Let the world meet Connor and the faces of CHD” on facebook, as well as gain interest in a “CHD Awareness Shout Out” on December 28th, using social media statuses to gain the attention of others.

These efforts are starting to unify a once separated community, preparing us for the national organization that will change our landscape. But, it will not be able to be done without the thousands of advocates around our great country and around the world coming together. I want to thank everyone who has been putting in effort to raising awareness in any way, sharing your story, helping us push the word via social networking, sharing a kind word to a family in need, fund raising events and much more.

I’ve had the privilege of speaking with most of the current national organizations and what their goals and aspirations are, each has taken steps in furthering our cause. I find important the necessity to prevent unnecessary infant death as the result of undiagnosed CHDs with the adding of new newborn screening guidelines as well as the support of families, children and adults affected by Congenital Heart Defects that are fighting through CHDs alongside the families that have lost a loved one because of it. Research is also important to me as we need more medical options that are less invasive and longer lasting, such as heart valves that grow with Children, the ability to graft things like ventricles from stem cells and other treatments and many many other things. More children will be alive longer with the furthering of the medical advances we already have. And lastly, but certainly not least, furthering awareness within the general public so that even now, soon to be mothers will ask their OB or doctor, will you check my baby for a heart defect?

With those goals in mind, I made the personal decision to work with the It’s My Heart Foundation starting a chapter here in Denver. Simply put, It’s My Heart was the only foundation that encompassed all of my goals and aspirations within the Congenital Heart Defect community. Losing my son to a CHD I know the importance of preventing death among our children, friends and loved ones who suffer from it. We simply cannot candy coat CHDs and paint it in a pretty picture. It’s like going to Iraq and showing the rebuilding efforts without showing the tragedy of what our brave American soldiers face every single day. There is MUCH importance in providing hope and health to those that live with it from day to day, but you can’t have that hope if we don’t save more kids from dying as a result of Congenital Heart Defects. Preventing death and promoting health occur hand in hand. And it seems like there was a disconnect between my goals and the goals of others with exception of IMH. The need for a national public awareness campaign, the need for research, support, prevention of CHD related death and the promotion of health among those living with CHD are the most important of our crusade. Hearing, “You’re exactly right” from the founder of It’s My Heart was a sigh of relief, someone understands.

I think all of the individual efforts that have been taking place all across the internet have been amazing, but it’s time. It’s time we really dig down and start to take part of something BIGGER without abandoning what we’re working on, something that will help to unite all within our community. We cannot simply sit around waiting for the Congenital Heart Futures Act to provide all the answers. While it is a vital component to our campaign it cannot simply be the focus. Neither can individual aspects of our struggle, everything must be included or we’re leaving good folks feeling out.

My thoughts are simple. With the It’s My Heart Foundations goals and aspirations matching my own identically, and the number of people with the It’s My Heart Foundation that I’ve met also matching those same aspirations, I feel that It’s My Heart is the National Organization to get behind if we want those things I outlined done. It’s My Heart offers many existing chapters throughout the nation but NEEDS us in positions to STEP UP and create ones. Here is a list of the existing chapters. Southern Louisiana and Denver are being formed now. Its important to know, you won’t be doing this alone.

What I’ve found to work is digging in and around your local area for heart parents / patients that want to get involved. For example I contacted Children’s Hospital of Denver and am contacting The Children’s Miracle Network here in Denver so we can do a Comfort Bag Drive, this will allow us to set-up at the Children’s Hospitals and have people donate items which go to the Parents and Children in the CICU’s and NICU’s of these hospitals. Items include personal effects like toothpaste and shampoo (when your in the hospital for weeks / months, these come in handy, coloring books for the kids and much more. See the items list here. This will allow us to get media attention on the fact, mainly because each one of us has a story, Aiden’s story is sad yes, but inspiring no? That along with what we’re doing, donating our time to help others in our situations is amazing. This will drive people out of the woodwork that want to help, soon you’ll be flooded with volunteers.

Starting in your own back yard YOU can start making a difference. You also are able to communicate with the IMH chapters nationwide, allowing a coordinated effort to raise awareness, money and all of the things important to the CHD community, almost as importantly we understand that treatment doesn’t stop just because children grow up. It’s My Heart fully understands the needs of help with the adult community of CHD patients as well. If you can’t find a It’s My Heart Chapter to participate with in your area, consider starting a chapter, more information on that can be found here.

The more people we bring into this effort, the more we can change the landscape in which we leave. Consider this over the Christmas Holiday and think about what you can do to lend a hand to those affected by Congenital Heart Defects. If you need help with anything on It’s My Heart many Chapter Presidents and Executives are online all the time and more than willing to help. Feel free to contact us if you need any help.

God Bless everyone and their families this Christmas.

Levi M. Beers
President, It’s My Heart: Denver