Showing posts with label News. Show all posts
Showing posts with label News. Show all posts

Tuesday, August 11, 2009

Treatments Hard to Come By...

Take a peak at this entry on the Wall Street Journal blog... it doesn't come as a surprise to patients and families of CHD patients, but it's news all the same:

There is not enough research into CHDs.

What's wrong, however, is the statement that this problem is too small for companies to invest research in. With 1 in 120 (approximately) kids born with heart defects, and a large percentage of those kids needing intervention, you can bet it's big enough to pay attention to.

The article does highlight, though, that there is hope in terms of new research. According to WSJ, the NIH is studying treatments in children with certain heart conditions and the American College of Cardiology is launching a catheter registry that aims to help inform doctors who treat kids. And at least one heart device for kids appears to be on the way: Medtronic’s experimental heart valve for both children and adults who had heart defects at birth.

Baby steps, but we can get there!

Tuesday, July 14, 2009

Never Give Up

An article published by Associated Press today left me dumbfounded. It reminded me to never, ever give up hope. You've GOT to read this article in its entirety (see summary below). See if you feel the same...

British girl's heart heals itself after transplant

Sir Magdi Yacoub of Imperial College London thought that said that if Clark's heart was given a time-out, it might be able to recover on its own. So in 1995, Yacoub and others grafted a donor heart from a 5-month-old directly onto Clark's own heart. After four and a half years, both hearts were working fine, so Yacoub and colleagues decided not to take out the extra heart.

However, the powerful anti-rejection drugs Clark was taking caused cancer, which led to chemotherapy. Even when doctors lowered the doses of drugs to suppress Clark's immune system, the cancer spread, and Clark's body eventually rejected the donor heart.

In February 2006, doctors removed Clark's donor heart. Luckily, by that time, Clark's own heart seemed to have fully recovered. Since then, Clark — now 16 years old — has started playing sports, gotten a part-time job, and plans to go back to school in September.

At the moment, doctors aren't sure how that regeneration happens. Some think there are a small number of stem cells in the heart, which may somehow be triggered in crisis situations to heal damaged tissue.

Granted, Hannah's case is a rare and miraculous one, but it does give us a window of hope for the future!

Side note - even if this were to become an option for treatment in the future, there is a serious shortage of donor organs available for such transplants. Consider becoming an organ donor today, and asking your loved ones to do the same!

Tuesday, April 28, 2009

Charities Recognized for CHD Efforts

This past month, two outstanding CHD-related charities were selected by IntelliClear as its 2008 Clarity Trust recipients. Congratulations to Its My Heart and HeartGift Foundation!

As the Congenital Heart Futures Act is being introduced to both houses of the United States Congress this spring, IntelliClear recognizes this year the outstanding efforts of It's My Heart and HeartGift as leading the charge on children's CHD.

"According to the American Association of Thoracic Surgery, an astonishing 93% of the world's population has no access to cardiac surgery. With the assistance of generous corporate citizens like IntelliClear -- by combining our resources, our skills and our compassion -- HeartGift's all volunteer team of pediatric physicians will continue to save the lives of children born with CHD," says Lisa Rodman, Executive Director of The
HeartGift Foundation.

"Since CHD is America's #1 birth defect, it is vital that we bring awareness to the nation via community outreach, hospital programs and other support services that bring families and resources together. It's My Heart, Inc. relies heavily on the compassion of corporations like IntelliClear Inc., allowing us to further our advocacy and awareness programs for those affected by CHD," says Corrie Stassen, Executive Director of It's My Heart, Inc.

If you haven't taken a chance to check out these two fantastic charities, take a look today!

Monday, January 26, 2009

It works better when you work together!

It’s hopeless.

We can’t do anything.

That is what parents of babies diagnosed with Hypoplastic Left Heart Syndrome (HLHS) were told not many years ago. The word Hypoplastic means “underdeveloped”, and that is exactly what has happened: the heart’s Left Ventricle is much too small to pump blood to the body. The hypoplasia extends much further than the Ventricle; the Aortic and Mitral valves are tiny (or nonexistent), and the Aorta itself is tiny. The child is alive only because of a Patent ductus arteriosus, a “built in” heart defect everyone is born with.

The Ductus Arteriosus is a small connection between the Pulmonary Artery and the Aorta that allows the heart to function while still in the womb. Once the child is born, the connection will close by itself, usually in less than two weeks. A connection that is “stuck open” — a Patent ductus arteriosus — is easily corrected. But in this case, when the ductus closes, blood flow drops and the child goes into shock.

HLHS was the defect the doctors had no answer for. Obviously, a surgical repair was the only option, but how? How do you fix a heart that is, for all intents and purposes, missing the left half? A heart transplant was an option, but rarely was an infant’s heart available, and there was almost no time to find one.

But in the early 1980’s the answer came. Rather than try to fix everything at once, make the repair in stages. Three operations, (known collectively as the Norwood Procedure) performed in sequence, allowed the child to survive. Certainly it was understood that this wasn’t a cure, but the child could live if he or she received lifelong medical care.

Fast forward to 2009. The first generation of HLHS survivors are now in their early to mid 20’s. And with no older survivors, no one has any idea what future health problems may affect them. Like Edmund Hillary climbing Everest, no one’s been here before, and no one has a clue what's ahead.

The CHD Blog and Adventures of a Funky Heart will both be in Washington, DC on February 10, 2009 to support the National Congenital Heart Coalition (NCHC) effort to create a national registry of patients with heart defects. The NCHC is made up of several different CHD organizations, working together for the first time. The American College of Cardiology, the Adult Congenital Heart Association, It's My Heart, the Congenital Heart Information Network, Mended Little Hearts, and the Children's Heart Foundation have all come together to work for this important cause. (The group information is taken from the cover of the informational packet that was mailed to attendees; there may have been more groups that have joined the effort since then!)

If data is gathered about those of us living with a Congenital Heart Defect right now, it could be analyzed and used to predict our future health care needs. It can also be used to make things a little easier for the next generation of CHD patients. As an example, I take 11 different medications. Yes that is a lot, but some CHD’ers take more, and some take less. If the knowledge gained from a national registry could eliminate one medication that each of us has to take, the savings would be phenomenal.

Much too often you read in your local newspaper about the child who needs surgery for a major heart defect (Infant Survives Heart Surgery, reads the title of the one and only article about me in the local Daily Planet) but what happens after that? Usually you don't see a follow up article in the local press. But Cardiac Kids grow up; we get jobs, pay our taxes, fall in love…

... In other words, we live our lives.


Thursday, January 8, 2009

Newborn Screening Test Could Save Lives

Research paper: Impact of pulse oximetry screening on the detection of duct dependent congenital heart disease: A Swedish prospective screening study in 39,821 newborns

The British Medical Journal

Routine screening of blood oxygen levels before discharge from hospital improves the detection of life threatening congenital heart disease in newborns and may save lives, according to a study published on bmj.com today.

The low false positive rate of pulse oximetry screening and the reduced need for treatment because of a timely diagnosis also makes this a cost effective intervention, say the authors.

Pulse oximetry screening has been suggested for early detection of congenital heart disease, but its effectiveness is unclear.

The authors found that in apparently well babies ready for discharge a combination of clinical examination and pulse oximetry screening had a detection rate of 82.8% for duct-dependent heart disease. The detection rate of physical examination alone was 62.5%. Pulse oximetry also had a substantially lower false positive rate (0.17%) compared to physical examination alone (1.90%).

However, some babies had been detected before discharge examination, meaning that the introduction of pulse oximetry screening in West Götaland improved the total detection of duct dependent heart disease to 92%. This was significantly higher than the 72% detection rate in other regions not using the screening technique. Interestingly, improved detection was achieved by a maximum of just five minutes of extra nursing time per baby.

Saturday, November 29, 2008

A Day to Remember

On this day in 1944, the pioneers in surgical repair of congenital heart defects completed the first successful CHD surgery. So many of us owe our lives, or our childrens' to these two innovators. Steve, of Adventures of a Funky Heart, gives us a brief history lesson today... not just on these two incredible people, but on the unsung hero who REALLY made our, and our children's lives possible in the face of CHDs.

As part of a prolonged weekend of thanks giving, take a moment to send a little thought or prayer of thanks to the hundreds of unsung heroes working to save us.


From Adventures of a Funky Heart...


Vivien Theodore Thomas was born on August 29, 1910 in Lake Providence, Louisiana. After graduating high school in 1929, he planned to attend Tennessee Agricultural and Industrial State Normal School, (now known as Tennessee State University) with hopes of becoming a doctor.

He had been in school two months when the stock market crashed, causing him to lose his part-time carpentry job. Forced to drop out of college, Thomas still found work as a Lab Assistant at Vanderbilt University Medical School, working for surgeon Dr. Alfred Blalock. Although hired to sweep floors and clean out cages, Vivien Thomas impressed Dr. Blalock with his intelligence. Blalock was so impressed that he trained Thomas to be his Surgical Technician.

Thomas began assisting Blalock in the study of shock during surgery. Shock is caused by a sudden drop in blood flow through the body, and can be fatal. Working together, Blalock and Thomas developed ways to prevent shock from occurring during an operation. By World War II most of their theories were in use, saving the lives of countless injured soldiers.

In 1941, Dr. Blalock was hired by Johns Hopkins Hospital in Baltimore, Maryland, to serve as the hospital’s Chief Surgeon and as a Surgical Professor in the Hopkins Medical School. The doctor asked his trusted assistant to go with him, and Thomas agreed. But while Blalock was responsible for training every surgeon in the school, Thomas had to enter the building through the service entrance. He was also listed on the hospital payroll as a handyman.

The two men respected and trusted each other, but were hardly equal. At one time, Blalock was paid ten times more than Thomas. Often the doctor hired Thomas to serve drinks in his home during a social event. And never was Thomas allowed in the Operating Room.

It was at Johns Hopkins that the two men met Dr. Helen Taussig. Taussig had been hired in 1930 to oversee the Cardiac Clinic of the Harriet Lane Home, and quickly grew interested in “Blue-Baby” diseases.

Usually, blood coming into the heart is routed first to the lungs, where it absorbs oxygen. The oxygen rich blood then goes back to the heart, where it is pumped throughout the body. Blue Babies are born with a badly formed heart or blood vessels that cannot provide enough oxygen to the blood. Their skin has a distinctive blueish tinge, especially in the fingertips. At that time Blue Baby diseases were incurable, and almost all of the patients died very young.

Dr. Taussig approached Dr. Blalock with an idea: if a Blue Baby’s heart couldn’t provide oxygen to the blood naturally , then why couldn’t a surgeon re-route the major blood vessels? Taussig’s plan was interesting but extremely dangerous. The operation would have to take place near the heart, and heart surgery was so risky it was almost never recommended. Any accidental damage to the heart would have to be repaired within 4 minutes, or the patient died.

Busy with his teaching duties, Blalock asked Vivien Thomas to work out the details of how such an operation could be done. Thomas began by studying medical textbooks, drawings and diagrams of hearts, and even real hearts taken from dead bodies. Then he operated on dogs, intentionally creating Blue Baby hearts in them. Later he would operate again, repairing the heart and making careful notes of everything he did. It was a slow process, learning exactly what had to be done. Many dogs died, and several of the surgical tools he needed didn’t even exist. Quite often, Thomas would invent them.

X-rays of the patient were another problem. X-ray films provide a good still photograph of the workings of the body. But Taussig preferred to use a fluoroscope. A fluoroscope image is best described as “X-ray TV”– It provided moving images of the interior of the body. If the patient accidentally moved, so did the picture. There was no way to record the fluoroscope image, so the three doctors would have to study their patient’s fluoroscope scans carefully and commit them to memory.

At last they felt they were ready, and Taussig began to search for a proper patient. On November 29, 1944, they operated on a little girl named Eileen. Although fifteen months old, Eileen only weighed nine pounds.

Thomas had planned to be in the observation room, watching the operation. Blalock said no – he felt more comfortable with Thomas close enough to give him advice. In preparation for the operation, Thomas had performed the procedure over 100 times on animals. Blalock had been taught the procedure by Thomas, but had actually done it only once. Breaking all the rules of the time, Thomas entered the operating room and guided Blalock through the operation.

Eileen’s heart never stopped beating and her blood vessels were only as thick as a matchstick. After about 90 minutes, Blalock was finished. Everyone held their breath as he removed the last clamp from a blood vessel. After a long pause, Helen Taussig said “Al, the baby’s lips are a glorious pink color.”

Proven to be a success, Blalock’s team performed nearly 300 operations in less than a year. Surgeons came from around the world to study Blalock’s new surgical procedures, only to learn that Thomas was the expert, not Blalock or Taussig. Still, the operation was known as the “Blalock-Taussig Shunt,” named for the surgeon who performed it and the doctor who suggested it.

Blalock retired in 1964 and died four months later. For six years, Thomas continued to teach but took on no major project – almost as if he were in mourning. But as the 1970’s began, more and more African-Americans were entering the Hopkins Medical School. To them, Vivien Thomas was not just one of their teachers, he became their mentor. And just as he had guided Blalock so many years before, Thomas’ advice and support guided a new generation of doctors through medical school.

Thomas died in 1985, just a few days before his autobiography was published.* Today, Vivien Thomas is almost unknown to the general public. But Dr. Alfred Blalock never forgot him. If someone stood too close to his right shoulder during an operation, Blalock would tell them to back away. “Only Vivien may stand there.”

* Thomas’ autobiography has been reissued with a new title: Partners of the Heart: Vivien Thomas and his work with Alfred Blalock.

Wednesday, November 12, 2008

Stem Cells May Help Repair Valve Defects!

Bloomberg Science, Nov. 10 -- Cardiologists at the University Hospital of Munich believe that umbilical cord blood, rich in stem cells, may bre the raw material needed to repair the hearts of thousands of children born each year with defective heart valves. The researchers reported the findings at the November 10 annual meeting of the American Heart Association. They believe they are 5 to 7 years away from transplanting new valves created from cord blood with patient's faulty valves.

The Munich researchers are ready to begin trials in lambs, using collected cells (frozen for preservation) to seed into biodegradable polymer scaffolds. Thus far, eight bio-engineered valves have acted much like natural heart valves when tested for blood flow and pressure. The scaffolds will disolve over time, leaving behind a fully formed structure made from the cells, they assert. The next step will be to transplant the heart valves into hearts of young lambs, watching them to see how they grow and function over time. The experiments are hoped to begin next year.

Click here to read more...

Tuesday, November 11, 2008

No Drop in IQ Seen After Bypass

ScienceDaily, Nov 10, 2008 -- Good news for older children facing cardiopulmonary bypass, or CPB. Scientists at the Cardiac Center of Children's Hospital recently conducted a study of children aged five to 18 who underwent heart surgery while on a heart-lung machine to circulate their blood. The research found that the use of CPB does not cause short-term neurological problems in children and teenagers after surgery for less complex heart defects (such as valves or ASDs/VSDs), according to pediatric researchers. The new finding contrasts favorably with previous studies that showed adverse neurological effects after newborn surgery for more complex heart conditions.

Click here to read more...

Monday, November 10, 2008

ACHA's Top 10 for Adults with CHD

Source: EmaxHealth, 11/8/08

Today, most children born with CHD have a good chance of living well into adulthood, thanks to research and innovation. However, the increasing adult CHD population poses a problem - many adult cardiologists are unfamiliar with the resulting heart anatomy and physiology that results from surgical repair. Adults with CHDs are encouraged to see specialists that are familiar and experienced with CHD. Check out Kansas City's Fox Affiliate for a recent health update and interview!

In an effort to assist cardiologists in their every day decisions for adults with CHD, the American College of Cardiology and the American Heart Association have jointly released a comprehensive set of practice guidelines. The guidelines—the first of their kind in the United States—appear in the December 2, 2008, issue of the Journal of the American College of Cardiology (JACC).

ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease include:
  1. Given current surgical mortalities of less than 5%, in the next decade almost 1 in 150 young adults will have some form of congenital heart disease (CHD).
  2. There should be enhanced education of adult cardiovascular specialists and pediatric cardiologists in the pathophysiology and management of adult CHD (ACHD) patients.
  3. Practitioners are provided with logical well-conceived care plans for patients with simple (e.g., isolated small VSD), moderate (e.g., tetralogy of Fallot) and complex (e.g., cyanotic congenital heart defects) lesions.
  4. Consultation before pregnancy, including genetic counseling, so that both men and women with ACHD should have a thorough understanding of the risks of transmitting CHD to their offspring.
  5. ACHD patients should carry a complete medical “passport,” listing specifics of their past and current medical history and contact information for immediate access to data.
  6. A formal transition process should be used to help teenagers and young adults cross the bridge from their pediatric cardiologist to an adult cardiologist.
  7. ACHD patients must be informed of their potential risk for infective endocarditis and should be provided with the AHA wallet card with instructions for prophylaxis.
  8. Outreach and education programs should be organized to bring patients back into the healthcare system if they are no longer receiving appropriate care and follow-up.
  9. Health care should be coordinated by regional ACHD centers of excellence.
  10. Every ACHD should have a primary care physician
Source: Warnes et al ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines for the Management of Adults With Congenital Heart Disease). http://circ.ahajournals.org/cgi/reprint/CIRCULATIONAHA.108.190690

Wednesday, October 29, 2008

Become a CHD Advocate!

When you are a survivor, or a parent of a child that is or was affected by a CHD, you often feel helpless in a sea of insurance, legislation and lack of information. Many many of us never knew that 1 in 120 children born each day are affected with CHD before we received a diagnosis. And almost everyone affected wants to change that.

Many groups across the U.S. are working on providing support and comfort to people affected by a CHD diagnosis. But who is working with our legislators and government agencies to bring about desperately needed change? How can we create a better future for CHD survivors?

The answer? The National Congenital Heart Coalition. Formed just over a year ago, this coalition is the culmination of six major, US national groups' efforts to create a climate of change for our disease. We seek to create better avenues of awareness and advocacy, which in turn will lead to greater focus on research and technological advancements that will save lives through earlier diagnosis, better screening, advancements in quality of life and surgical breakthroughs. Consisting of the Adult Congenital Heart Association (ACHA), the Children's Heart Foundation (CHF), Children's Heart Information Network (CHIN), Mended Little Hearts (MLH), Saving Little Hearts, It's My Heart (IMH) and Little Hearts, this newly founded organization is already making strides in unifying our cause. Current projects include the creation of a unified message, creating a presence in government agencies who monitor CHD and distribute funds for research and, most recently, a unified effort in lobbying our government for a central registry of CHD statistics.

Lobby Day has been a significant effort undertaken by the ACHA over the two years. This year, the entire National Coalition (NCHC) is behind the effort, and YOU are invited to help us make a difference! You are welcome to attend the lobby day, which will be held on February 10, 2009 in Washington DC. Or, you may learn how to participate in your own local area.

Online registration is now open and available at: www.achaheart.org/getinvolved/lobbyday2009.php.

Monday, October 20, 2008

CHD Death Incidence in Infancy

Source: Patient Health Information, 13 October 2008

MedWire News: A significant number of babies are dying soon after birth because of undiagnosed congenital heart disease, a US study suggests.

To examine the extent of the problem, researchers from the University of California used the California death registry for the years 1989−2004 to assess data on 898 infants who died of congenital heart disease between birth and 1 year of age.

They found that, in total, 152 of the babies had a missed diagnosis of congenital heart disease. The average age at death was 14 days and more than half of the babies died at home or in the emergency department, indicating that they had been discharged from the postnatal ward. The team concluded that current screening methods are inadequate.

That's roughly 1 in 8 deaths with a condition previously undiagnosed that died at about 14 days. It is not clear that these children could have been saved if they had been diagnosed on time. Only time, and the creation of an adequate registry for CHD, will provide these answers.

This is one front that all CHD organizations, large and small, should be united on - creating an adequate survey of patients, births and deaths related to CHD, so that we can truly begin to understand this series of anomolies.

Monday, October 6, 2008

The Moral Obligation to Give Back

If you haven't yet subscribed to Adventures of a Funky Heart, (written by an adult CHD survivor and packed with humor and insight), I highly encourage you to peruse the interview he recently conducted with Amy Verstappen, President of the Adult Congenital Heart Association (ACHA) and a survivor of Congenitally Corrected Transposition of the Great Arteries. In her interview with Steve, Amy discusses her "moral obligation" to give back to the CHD community after her personal experiences as an adult survivor. Her personal story is an interesting one, but the action she has taken is nothing short of inspirational.

In the past year, the ACHA has recently joined with several other Congenital Heart Defect organizations to form the National Congenital Heart Coalition. Amy is actively involved in creating new legislation to bring much needed research and attention to CHD issues.

“I am 100% positive that in the long run we will have an integrated, high quality care system for all survivors,” Amy says in the interview. “Our really long term goal is to have a very unified system with research, a registry, a way to quantify outcomes, all the centers talking to each other, sharing information and building knowledge together...”.

Ms. Verstappen is determined to educate parents on the long-term needs of CHD patients. She tells Steve that she “...presented a pilot version of [a new brochure designed by ACHA specifically for parents] to a group of Heart Moms - all leaders of some of the advocacy groups for children - three of them told me that no one had ever told them that their child was going to need this level of care.” Amy goes on to describe some of the questions that parents of children with a heart defect should be asking.

I can tell you, as one of those moms who didn't know or understand the long term implications (I have a child with Transposition of the Greater Arteries who I was told was "fixed!"), that the information provided is valuable and too important not to take a moment to read.

I highly encourage you to take a minute and check out the latest entry at Adventures of a Funky Heart! Not only is it a great personal story of one of the movers and shakers of the CHD community, but it is also a great source of information for parents, teens and adults alike!

Monday, September 15, 2008

Too Close To Home...

A recent article in The Sun (13 Sept) asserts that a teenage girl with a congenital heart defect died after telling her gym teacher she did not feel well. She was warming up for hockey practice when she asked to stop because of chest pain but, according to classmates, the gym teacher told her to keep going. The classmates then watched her collapse on the pitch.As a heart parent, I can tell you that this is one of my biggest nightmares. I've been unable to let go of the bond with my daughter into another's care (other than family members and the occassional night out while the neighbors come over). Granted, she's only two at this point, but I worry about the day when she will enter public or private school, out from beneath my watchful eye. I've heard so many stories about children with special directives and orders who are overlooked or ignored by their teachers, counselors, coaches, etc. How will I protect my daughter from such a tragedy, yet encourage her toward independence?

Of course, no one can fully protect their child. I understand this. But one can take steps to help ensure a tragic accident such as this one does not occur. The parents of the girl who passed away at hockey practice had made the school aware of Sasha's condition, so they assumed that this information would be passed on to her teachers. Apparently, it was not.

As parents, it is our responsibility to teach our children how to live with their heart condition, to know their bodies and be able to judge accordingly when "enough is enough." The father of the deceased child said, “Sasha had lived with her heart condition since she was born and she knew her own body. Yet even though the school knew she had this problem, they still didn’t listen to her when she said she was unwell.”

Clearly there is something to be learned from this tragic incident. I know I personally take the following from it:

  1. Teach your child about their heart condition. Help them to understand their body.
  2. Make sure your child's caregivers are aware of his or her condition, and the potential stresses that could lead to a serious medical crisis.
  3. Teach your child that it's OK to take breaks when you need to. Even if a coach, friend or other person is pushing you to go farther, your child is the best judge of his/her body. Don't take unnecessary risks.
  4. Talk to gym teachers, coaches and other sport instructors that your child will be working with. Make sure they understand the child's condition and any special considerations and precautions that should be taken.
What do you do to protect your child? How have you taught him to read his body's signs? How do you help her to engage in a healthy, active lifestyle without providing undue stress to her already fragile heart?

Friday, September 5, 2008

Real CHD Survivors on Reality TV!

GROWN UP “HEART KID” FEATURED ON SEASON FINALE OF LIFETIME TELEVISION’S HIT SERIES “HOW TO LOOK GOOD NAKED"

PHILADELPHIA – SEPTEMBER 04, 2008 – The Adult Congenital Heart Association (ACHA) announced today that congenital heart defect (CHD) survivor, Heather Magee, will be featured on the season finale of Lifetime Television’s hit series, “How To Look Good Naked,” airing September 9 at 10:00 PM EST.

Magee, a survivor of two childhood surgeries to correct a congenital heart defect that left her with only one working ventricle, the most recent of which was performed in October 2007, confronts her body image on the show in the wake of multiple scars, both physical from the incisions, and the mental impact of coping with a congenital heart defect as an adult.

“For almost twenty years I lived under a false sense of security that my heart condition was a childhood problem that was fixed long ago,” said Magee. “When I discovered four years ago that CHD is a lifelong struggle that requires ongoing care, it threw me for a tailspin. Not only did I suffer physically from my condition and the resulting corrective surgery, but mentally as well. I participated in ‘How To Look Good Naked’ both to raise my self esteem after a traumatic time in my life, and also to raise awareness among the millions of adults living with CHD that they must seek treatment for their condition if they aren’t already doing so.”

Approximately 1.8 million adults in the United States are living with congenital heart defects. Most, like Magee, underwent open-heart surgery as an infant or child, and drop out of special congenital heart care, as they believe themselves to be “fixed.” However, recent evidence shows that heart procedures performed on young children may weaken over time, leading to serious health complications as early as young adulthood.

Magee’s appearance on the season finale of “How To Look Good Naked” will do more than just increase awareness of congenital heart defects among the viewing audience, it will help raise the funds necessary to continue the ACHA’s mission. For the first time in the series’ history, the episode also served as a fundraiser. The show featured Magee and other adults living with CHD in a charity fashion show that raised $10,000, which will be divided between the ACHA and the Ahmanson/UCLA Adult Congenital Heart Disease Center (Ahmanson/UCLA ACHD Center), where Magee was treated for her condition.

More about the show can be found at Lifetime's website.

For More Information:
Anna Espe, Development Associate
Adult Congenital Heart Association
215-849-1260
aespe@achaheart.org

Wednesday, July 9, 2008

Research Yeilds Answers on Aortic Arch Defect Causes

By The Pittsburgh Tribune-Review
Tuesday, July 8, 2008

Research led by University of Pittsburgh scientists is the first to describe how two common congenital circulatory problems form, the university announced today.

The team found that a gene called unc45a plays a critical and previously unknown role in the formation of aortic arch vessels. The vessels contribute to several of the body's major arteries and often develop improperly, causing a wide range of vascular defects.

The team also found that arteriovenous malformations, or AVMs, happen when an artery fuses with a vein, diverting blood flow, and result from genetic and physiological factors. Previously doctors had believed its origins were solely genetic.

The research is published in the journal Developmental Biology. Scientists at Georgetown University Medical Center and the National Institutes of Health also participated.

Friday, June 13, 2008

Stereoscopic Glasses May Aid Beating-Heart Surgery

Source: iTNews, 10 June 2008

In a recent study, the three-dimensional glasses have been used in a successful operation on pigs with a common form of congenital heart disease.
The newly-tested stereoscopic glasses enable depth perception by splitting computer images in two, and cocking them at slightly different angles to provide surgeons with ultrasound images of the beating heart as a hologram.

Researchers expect that clinical trials of beating-heart surgery with the patching system could begin in children with ASDs this year.


Thursday, May 22, 2008

US Cardiac Specialists to Assist in China

Team Of Top US Cardiac Specialists To Perform Critical Operations On Children In China
Medical News Today

16 May 2008. Heart disease is the world's most common birth defect, affecting one in every 100 children. Without treatment, one third of these children die before their first birthday. In developed countries, children are typically diagnosed and treated at birth. Children's HeartLink, an international medical nonprofit, is reaching out and helping build sustainable pediatric cardiac programs in the underserved regions of the world, to help more children have the same opportunity. May 17 - 24, Children's HeartLink will be sending a team of volunteers from New York hospitals on a cardiac medical mission to Changchun, China, to provide advanced training and participate in lifesaving operations on needy children.

Last September at the Clinton Global Initiative in New York, the Bracco/Children's HeartLink Initiative was recognized as it announced the commitment's estimated total value of $1,000,000. The partnership will provide life-saving training, equipment and direct patient funding to Jilin Heart Hospital, in Changchun, Jilin Province, China -- reaching more than 12,000 children in the next 3 years.

The project will involve the training of medical personnel at the Jilin Hospital in China. The Bracco/Children's HeartLink Initiative will reach an estimated 4,000 children a year with emphasis on improving the quality of care. "In China, congenital heart disease is the primary cause of death of infants. This Initiative has the ability to impact thousands of lives" said Elizabeth Bickel, President of Children's HeartLink.

More info...

Those of us in the US are often so focused on how under-served our children are as well as the lack of awareness that it's often easy to forget how very lucky we are to have the facilities and care available, even if it is at a significant, life-changing cost... many in other countries do not. We're looking forward to seeing the results of this significant effort undertaken by Children's HeartLink!

Friday, May 16, 2008

$1 Million Gift to Support Earlier CHD Detection

Washington, DC (PRWEB ) May 15, 2008 -- The Elsie & Marvin Dekelboum Family Foundation has announced a gift of $1 million to Children’s National Medical Center. The gift will allow the Children’s National Heart Institute to launch a Congenital Heart Defect Screening Study. Children’s National will name a three-bed bay in the new Cardiac Intensive Care Unit in honor of the Elsie & Marvin Dekelboum Family Foundation.

The heart defect screening study will focus on the effectiveness of an inexpensive device called a pulse oxymeter that could help identify more than 80 percent of life-threatening congenital heart defects. If initial findings are validated, the Dekelboum gift will enable Children’s National to promote its use in hospitals across the country and around the world – improving early detection and health outcomes for children everywhere.

Tuesday, May 6, 2008

Important: Digitek Recall

Though the recall happened on April 25, I talked to a parent today who did not know about this, so felt it was important to post.

If you or your child take Digitek, please see the recall on the
FDA website. Please spread the word to anyone who takes or may take this medication, as it seems that there has been little publicity, and many pharmacies are not aware of, or have been ignoring the recall.

"The voluntary all lot recall is due to the possibility that tablets with double the appropriate thickness may have been commercially released. These tablets may contain twice the approved level of active ingredient than it appropriate.

Digitek® is used to treat heart failure and abnormal heart rhythms. The existence of double strength tablets poses a risk of digitalis toxicity in patients with renal failure. Digitalis toxicity can cause nausea, vomiting, dizziness, low blood pressure, cardiac instability and bradycardia. Death can also result from excessive Digitalis intake. Several reports of illnesses and injuries have been received."

I read a blog today by one family (if I get permission, I'll add the link) that had been affected by the recall - their daughter was taking the double-dosage tablets. They posted the following photo showing the difference between the normal size (in this photo, Digoxin, the replacement for the recall) versus the recalled Digitek, which is quite larger.

Send Flowers to Mom & Help Raise Funds for Research!

LINCOLNSHIRE, Ill., May 5 /PRNewswire/

The Children's Heart Foundation today announced a new partnership with ProFlowers(R) -- the online fresh flower marketplace -- just in time for Mother's Day! Shoppers can visit http://www.proflowers.com/CHF and choose from a variety of beautiful, fresh-from-the-field flower arrangements. All year long, whenever flowers are purchased through the CHF page on ProFlowers, ten dollars from each purchase will benefit The Children's Heart Foundation (check out their new website!).

"Sending flowers to the mothers and grandmothers in your life is a great way to show your appreciation and celebrate their love -- and now it also can help raise much-needed funding to find better treatments and, hopefully someday a cure, for congenital heart defects" said William Foley, Executive Director, The Children's Heart Foundation.

The Children's Heart Foundation is the country's leading organization solely committed to congenital heart defect (CHD) research funding and is comprised of parents, family members and friends of those affected by a congenital heart defect. The goal of The Children's Heart Foundation is to increase awareness, support the recently diagnosed through educational materials and continue funding the most promising research to find better treatments.