Little Hearts offers stories of survival and hope from individuals who live and thrive with a congenital heart defect CHD such as HLHS, VSD, ORV, DILV and TGA.

Click on the links at right to view some of our members stories. These were created by members who have a child born with a congenital heart defect.

It is our intention that these sites offer hope, inspiration and support to those who view them.

To learn more about the different types of heart defects, visit our CHD facts page.

MEMBER STORIES by CHD Have a baby that is newly diagnosed with a CHD? Here are just a few stories of HOPE to share with you. Our membership is over 1900 and only a few have shared their story so if you only see a few stories with your heart child’s CHD, this is why. For some heart parents, it’s not easy to talk or write their heart child’s story while others are so busy and just don’t have the time! See just a few stories of ASD, VSD, Truncus, etc? That is only because not many of our members with a child with that CHD have shared their story. If you read a story and would like to connect with that member, email us!

WANT TO SHARE YOUR CHILD’S STORY?

2010 Picnic T-shirt Drawing Contest

WHAT DID THE 2009 ANNUAL PICNIC MEAN TO ME?

WHAT DID THE 2008 ANNUAL PICNIC MEAN TO ME? Members traveled from 15 different states - we had 6 pediatric cardiologists, 2 nurses, 1 cardiothoracic surgeon, 25 bikers from the Columbia Harley Owners Group of CT and over 700 members and their family joined us at our 12th Annual Picnic on June 1, 2008. Here’s what a few of them had to say about the day.

WHAT DID THE 2007 ANNUAL PICNIC MEAN TO ME? We had over 700 Little Hearts members and their family join us at our 11th Annual Picnic on June 3, 2007. Here’s what a few of them had to say about the day.

WHAT DID THE 2006 ANNUAL PICNIC MEAN TO ME? Here’s what a few of the members who joined us at our 10th Annual Picnic on June 4, 2006 had to say

HAS YOUR HEARTCHILD BEEN ASKED TO CUT BACK ON SPORTS - hear how some of our members handled this

ALCAPA - Tiernyn, born 2005

Aortic Stenosis, Critical - Ari, born 2009

Aortic Stenosis - Brandon, born 1995

Aortic Stenosis - Brandon, born 2009

Aortic Stenosis, Critical - Devon, born 2008

Aortic Stenosis, Severe - Elizabeth, born 2009

Atrial Septal Defect - Gabriella, born 2003

Atrial Septal Defect - Justin, born 1999

Atrial Septal Defect, PDA, VSD, TA - Jan, born 1968

AVCD, unbalanced, Downs Syndrome - Gabriel, born 2003

AVCD, unbalanced - Gianna, born 2001

AVCD, unbalanced, PS, VSD - Madeline, born 2003

AVCD, unbalanced - Ryan, born 2004

AVSD - Benjamin, born 2005

AVSD - Emily, born 2003

Cardiomyopathy, Dilated & Complete Heart Block - Elise, born 2008

Cardiomyopathy, non-compacted - CJ, born 2008

Cardiomyopathy & Complete Heart Block, Sara - born 2005

COA - Caden, born 2005

COA - Nicholas, born 2002

COA , VSDs - Delaney, born 2005

COA, VSD - Stephen, born 2001

COA, VSD, bicuspid AV, small MV - Wyatt, born 2009

Coronary Artery between PA and Aorta - Benjamin, born 2000

Corrected TGA, VSD, PS, Pacemaker - Justin, born 2006

DCRV - Erin, born 1993

DCRV - Raychel, born 2001

DILV - Autumn, born 2008

DILV - Charlie, born 2008

DILV, PS, TGA - Faith, born 2005

DILV, L-TGA, PS, VSD - Jack, born 2008

DILV, PS - Kimberly, born 1960

Discontinuous Pulmonary Artery, VSD, ASD, PS - Anjali, born 2008

DORV - Addison, born 2008

DORV - Alicia, born 1992

DORV, TGA, VSD, PA - Aidyn Ann, born 2007

DORV- Ashlyn, born 2008

DORV, TGA, VSD, COA - Dylan, born 2005

DORV, L-TGA, VSD, ASD, PS, Dextrocardia - Eden, born 2005

DORV - John, born 1999

DORV, TGA, ASD, VSD, PS, Dextrocardia - Kira, born 2002

DORV, VSD - Kyle, born 2009

DORV, TGA, VSD, PS, PDA, WPW - Laura , born 1998

DORV, VSD - Marin, born 2007

DORV, PS, TAPVR, AVSD, L-TGA - Naomi, born 2008

DORV, TGA, VSD, PS - Philip, born 2002

DORV - Rebecca, born 2007

DORV, PA, MS, VSD - Savannah, born 2005

DORV - Tekoa, born 2008

Ebstein’s Anomaly, ASD, PA - James, born 2003

HLHS SUCCESS RATES & STATISTICS

HLHS - Andrew/twin, born 2004

HLHS - Andrew, born 2004

HLHS - Annabel, born 2006

HLHS - Aubrey, born 2004

HLHS - Ayden, born 2008

HLHS - Ben, born 1990

HLHS - Bridget, born 1999

HLHS w/Intact Atrial Septum - Bryce, born 2005

HLHS - Collin, born 2004

HLHS - Cora, born 2009

HLHS - Cora, born 2005

HLHS - Daena, born 2001

HLHS - David/twin, born 2005

HLHS - Dezo, born 2006

HLHS - Dylan, born 2004

HLHS - Eloise, born 2006

HLHS - Emily, born 2005

2010 Are Birth Defects Preventable? July 2, 2010 news article regarding birth defects being preventable.

2010 Awareness - PR News by Little Hearts Here are the results of our survey regarding prenatal screening.

2010 Awareness - Don’t forget little hearts this Valentine’s Day In a new survey, Little Hearts Inc., a national support group, found that 60 percent of parents discovered a congenital heart defect after their child’s birth. That’s because mothers were not tested for heart defects during pregnancy

2010 Awareness - Shaun White, TOF survivor, wins 2nd Gold Medal ’White’s victory tonight is another in a long line of personal achievements for him and his family. Born with a serious heart defect called Tetrology of Fallot, White underwent two surgeries when he was younger to correct the malformations of his heart classic to this disease. He was also bow-legged as a child, and had to wear night braces to correct this defect. He overcame both obstacles, and was introduced to snowboarding by his father when he was six years old. His whole family decided to take the sport up in time.’

2010 Awareness - Shaun White: An Inspiring story of accomplishment despite CHD

2010 Awareness - Ruby’s story Here’s one member from Georgia sharing her daughter’s story - congrats Samantha!

2010 Awareness - Shaun White: From OHS to Olympic Hero

2009 Awareness - 13th Annual Picnic Little Hearts Press Release sharing the HOPE nationwide

2010 Awareness - Sam’s Story Here’s one mom’s accomplishment as a result of utilizing our PR News Kit! Congrats Teesa!

2008 Awareness - WICU12 News - MIRACLE BABY Little Hearts members, Roy and Angie share Aubrey and her story with others in PA on WICU12 news.

2007 Awareness from Oklahoma Dawn shares her son’s story with others in Oklahoma.

2007 Awareness 2007 - Little Hearts for Valentines Day Ed & Melanie share their son’s story (Ethan, TOF) in local newspaper.

2006 Awareness - CHD survivor offers hope One correction to article. The oldest HLHS survivor that Little Hearts is aware of was born 10/9/80. The oldest HLHS survivor who’s a member of Little Hearts was born March 1985!

2006 Awareness - Making Strides Little Hearts member, Angela, tells her daughter’s story (HLHS)

2005 Awareness - Toddlers face struggle with rare heart defects A member shared their child’s story with their local newspaper around CHD Awareness Day

2002 Awareness - Saving a Broken Heart On 12/7/02, Dateline NBC filmed 30 of our oldest Little Hearts members with HLHS swimming and having fun at an indoor pool. This show aired 8/22/03.

Jeffrey’s Story by his mom, Lenore Cameron, Founder of Little Hearts Jeffrey’s story appears in both ’You Will Dream New Dreams’ edited by Stankley Klein and Kim Schive and published in 2001 and ’The Heart of a Mother’ by Anna Jaworksi

Best Children’s Hospitals 2010-2011 The following terms appear on the pages with the Best Children’s Hospitals specialty rankings and individual hospital rankings data. A full explanation of the methodology and the 61 different measures that were factored into the rankings is available in the Best Children’s Hospitals Methodology Report, a downloadable PDF file.

Research - Congenital Heart Surgeons Data Center CHSSDC has been collecting longterm follow-up data and add their publications and research to their website.

Boston Globe - A medical first helps baby girl Please note that this story is about a baby diagnosed with HLHS with an intact septum. This combination has a lower survival rate than the ’average’ HLHS case.

Boston Globe - Childhood heart defects cause trouble years later ’To help address the problem, the American College of Cardiologists and the American Heart Association are developing new guidelines for treating adult congenital heart patients, including recommendations for specialized training for doctors. Boston has one of a handful of centers nationally that specialize in treating these patients. But many pediatric cardiologists who saw these patients as children work in hospitals unsuited to treating adults, while many adult cardiologists lack experience in handling congenital defects, specialists say.’

Boston Globe - Baby Steps One member’s story reported in the Boston Globe newspaper. Please feel free to email Little Hearts for a copy of the national survey that was published in American Journal of Cardiology.

Dr. del Nido - Biventricular Repair for HLHS ’We [Boston Children’s Hospital]have been doing bi-ventricular repairs in selected patients who are having problems with the Fontan operation and are otherwise candidates for Fontan takedown. Our experience to date is encouraging in that we have a number of children who have done well. We are currently evaluating our results with HLHS children and two-ventricle repairs and also have experience with children with canal defects where we have taken down the Fontan and were able to perform a correction. This is an area that our program has a particular interest in and plan to continue to develop. You are welcome to share this information with your members but they should understand that each case must be evaluated individually since this approach is only applicable to some.’ Email from Dr. del Nido to Lenore Cameron October 23, 2007

Dr. Jonas - Washington Post - Infant heart, the size of a walnut, rebuilt and running ’Jonas, 54, a native of Australia, went to Children’s last year after 20 years in Boston, where he was a professor at the Harvard Medical School. He is an advocate of ’early primary repair’ -- fixing heart malformations right after birth in a single operation. The team being assembled around him is turning Washington into a referral center for ultra-complicated pediatric heart surgery.’

New York Metro - Small Miracles ’Dr. Jan Quaegebeur doesn’t just repair sick children’s hearts—he reinvents them. How gifted is he? Ask 3-year-old Dorothy. Or her mom.’

Exercise Helps Children with Congenital Heart Defects ’Based on these results, Dr. Rhodes concluded that children with congenital heart disease should be evaluated for cardiac rehabilitation programs, and he predicted that two-thirds of those children could participate safely in exercise-training programs.’

Insurance for Children Insured Kids Now is available for all children throughout the USA.

Preparing a Child for Surgery Excellent website providing resources for families.

Screening - Pulse Ox Newborn Screening Article by Darshak Sanghavi, MD Excellent article by one of our Medical Advisory Board Members.

Screening - Pulse Ox Universal Newborn Screening - Has the time come? Conclusion - Although there is substantial evidence that pulse oximetry can identify the vast majority of neonates with cyanotic critical congenital heart disease, the use of universal pulse oximetry screening in clinical practice is less well established. Using the AHA classification of recommendations and levels of evidence for practice guidelines, the authors conclude that screening pulse oximetry may be considered because the benefits appear to exceed the risk but cannot be recommended.’ An exerpt from the conclusion.

Screening - Pulse Ox Effectiveness Study - 2002 Study ’Conclusions. This screening test is simple, noninvasive, and inexpensive and can be administered in conjunction with state-mandated screening. The false-negative screen patients had lesions not amenable to detection by oximetry. The sensitivity, specificity, and predictive value in this population are satisfactory, indicating that screening should be applied to larger populations, particularly where lower rates of fetal detection result in increased CCVM prevalence in asymptomatic newborns.’

Screening - Pulse Ox Newborn Screening Tacoma General Hospital Information Guide prepared by Tacoma General Hospital.

Screening - Sibling and Parent screening Screening siblings, parents of infants with severe abnormalities

Screening - Diagnosis of congenital heart disease still frequently missed or delayed Infant deaths due to missed or delayed diagnosis of congenital heart disease (heart defects present at birth) continue to be a significant problem, say researchers in the October 2008 issue of Archives of Pediatrics and Adolescent Medicine. ’Congenital heart disease affects 8 to 12 per 1000 live-born infants and is one of the most common and serious types of birth defects,’ writes Dr. Ruey-Kang R. Chang, of UCLA Medical Center. ’Many infants born with congenital heart disease are discharged from the hospital nursery with their conditions undiagnosed.’

Screening - Cardiac Screening for Teens Screening offered by the Cardiac Arrhythmia Syndromes Foundation. ’Organizers believe this is the largest EKG screening effort in the United States to target such large numbers of children without a history of cardiac problems. They hope the results will help resolve whether widespread screening should be done nationally to help prevent the roughly 100 sudden deaths each year in young athletes. The data on non-athletes is even less clear.’

Screening - 15 year old dies from undetected CHD ’Irmo High School students on Tuesday night will honor the life of a classmate, age 15, who died from what’s believed to be an undetected heart defect - an underdeveloped valve in his heart.

Screening - Signs of CHDs in Teen athletes ignored ’U.S. cardiologists, instead of widespread screening, favor efforts to raise awareness about the symptoms and risk factors, leading to testing of those at risk. They favor a focus on kids who have cardiac murmurs, fainting spells, chest pain or shortness of breath, plus any who have had sudden cardiac death in their families.’

Screening - Heart defects in young people can go undetected until serious trouble begins News article about a 17 year old learning that he had CHD.

Screening - Basketball Death Risk Detected in Harvard Athletes by $88.00 Test ’The tests, known as electrocardiography or ECG, were given to 510 Harvard athletes in addition to their standard physicals, according to a study published today by the Annals of Internal Medicine. The added tests identified two players who were deemed healthy in typical examinations despite having dangerous defects that should bar them from competition. Scientists in three articles debated the merits of routine ECG tests for athletes.’

Screening - Young Athletes need dual screening ’To best detect early signs of life-threatening heart defects in young athletes, screening programs should include both popular diagnostic tests, not just one of them, according to new research from heart experts at Johns Hopkins.’ 2009 Study

Screening - 6th Grader Heart Exams Shock Researchers Heart screenings given to 94 sixth graders at a school in Houston uncovered seven kids with heart conditions, including two requiring surgery, reports the Houston Chronicle. The study, led by Houston cardiologist Dr. John Higgins, shocked researchers who want to have heart screenings mandated for all sixth graders in the United States.

Screening - Heart Defect ruled cause of death of 14-year old A congenital heart defect caused the Wednesday afternoon death of a 14-year-old Chapel Hill High School (CHHS) freshman athlete, according to Douglas County Coroner Randy Daniel

Research - Doctor seek heart valve that grows with heart kids Hanley is one of a handful of researchers around the country trying to build a heart valve made of living human tissue that would grow with a child and repair itself over time. It’s a remarkably complicated task that incorporates stem cell science and biomechanical engineering, and an understanding of exactly how tissues grow and function amid the constant rush of blood in a beating heart - and scientists have been stuck on it for more than a decade.

Research - Discovery of Gene in Embryonic cells Cincinnati Children’s Research - ’Although the study was conducted using mouse embryos, the findings are significant in efforts to understand congenital malformations of the heart and craniofacial region in people. Especially relevant, the researchers said, is the insight gained into early molecular events during embryonic development that might help explain such birth defects.’

Research - NHLBI Funds Preclinical Tests on Devices for CHD patients The NHLBI funds $26.5 million towards preclinical testing of devices to help children born with a CHD or those that develop heart failure.

Research - FDA Warning to Pregnant Women FDA warns pregnant women to avoid Paxil

Research - Children’s Heart Foundation Funded Research

Research - Thoracic Surgery Foundation awarded Dr. Jennifer Hirsch $115,00 a year grant to develop an assessment tool for infants’ sensory and motor skills following CHD surgery. First female cardiac surgeon awarded ’$115,00 a year grant for the two year project to develop an assessment tool for infants’ sensory and motor skills following CHD surgery.’

Research - FDA approved Melody Transcatheter Pulmonary Valve Known as the Melody transcatheter pulmonary valve, the device is designed to be implanted through a small catheter inserted into the patient’s body. It replaces the pulmonary valve in patients born with a heart defect. It is the first heart valve approved for sale in the U.S. that can be implanted without open-heart surgery.

Research- Found new link to CHDs December 2009 NEWS - Researchers from UC San Diego School of Medicine and colleagues have identified a new gene linked to congenital heart defects.

Research - NHLBI $100 Million ’Bench to Bassinet’ The Bench to Bassinet program was devised by the National Heart, Lung, and Blood Institute, which is part of the National Institutes of Health. Dr. Lo’s project is in the Cardiovascular Development Consortium, which includes research teams from the University of Utah, Harvard University and the University of California, San Francisco. Another consortium comprising five research centers will focus its work on translational research in pediatric cardiac genomics. Both will work with an existing clinical pediatric heart disease network. ’Congenital heart defects are the most common and life-threatening problem for newborns in the United States,’ said NHLBI director Elizabeth G. Nabel, M.D. ’Our Bench to Bassinet research efforts will offer new insights into how the human cardiovascular system develops and help speed the transition of promising laboratory discoveries into treatments that can save young lives

Research - Stems Cells used to repair fetal defect ’Researchers said they have used stem cells collected from the amniotic fluid surrounding fetal lambs to grow windpipes, and then implanted the tissue back into the fetuses while they were still in the womb - a breakthrough that could lead to ways to repair congenital defects before birth.’

Research - Heart Valves Grown from Womb Fluid Cells ’Amniotic fluid was obtained through a needle inserted into the womb during amniocentesis, a prenatal test for birth defects that is often offered to pregnant women aged 35 and older. Fetal stem cells were isolated from the fluid, cultured in a lab dish, then placed on a mold shaped like a small ink pen and made of biodegradable plastic. It took only four to six weeks to grow each of the 12 valves created in the experiment.’

Research - Cord Blood Stem Cells May Help Repair Babies’ Heart Defects ’Cardiologists at the University Hospital of Munich say they are 5 years to 7 years away from transplanting new heart valves into children with faulty hearts, derived from the children’s own cord blood. The researchers reported the findings today at the annual meeting of the American Heart Association.’

Research - Use of Viagra in treating severe pulmonary hypertension ’BALTIMORE, Md., May 6, 2009 - Using sildenafil (Viagra) to treat severe, persistent pulmonary hypertension of the newborn can help them adapt to breathing outside the womb, according to a researcher here.’ Research by Miami Children’s Hospital

Research - Environmental Factors play a role ’Pirooz Eghtesady, MD, PhD, a cardiothoracic surgeon at Cincinnati Children’s, led a study of nearly 1,500 newborns from 38 children’s hospitals in the United States who had left-sided congenital heart diseases. Dr. Eghtesady and his colleagues found a seasonal occurrence of HLHS, but not other left-sided diseases, over a 10-year period, 1996 to 2006. Seasonal differences in HLHS occurred each year, with peaks between April and July and low points in January.’

Research - MRI helping Fetal Heart ’Researchers at the Georgia Institute of Technology, collaborating with pediatric cardiologists and surgeons at The Children’s Hospital of Philadelphia, have developed a tool for virtual surgery that allows heart surgeons to view the predicted effects of different surgical approaches. By manipulating three-dimensional cardiac magnetic resonance images of a patient’s specific anatomy, physicians can compare how alternative approaches affect blood flow and expected outcomes, and can select the best approach for each patient before entering the operating room.’

Research - Uncover genetic basic for some birth defects ’The research, titled ’Mouse and human phenotypes indicate a critical conserved role for ERK2 signaling in neural crest development’ is published in the November 10 issue of the Proceedings of the National Academy of Sciences of the United States of America.’

Research - STS: Percutaneous Pulmonary Stents to Remedy Stenosis in Repaired Valves Medical News from STS: Society of Thoracic Surgeons Meeting. ’The valve is constructed from a bovine vein which is sutured inside a balloon made of expandable alloy stent, and deployed to the pulmonary vein via a femoral or jugular vein, in a technique developed by NuMed. The device is getting investigational use in the U.S. at Miami Children’s, Children’s Hospital in Boston, and Morgan Stanley Hospital at Columbia in New York.’

Research - Human Bladders regenerated in labs US Scientists have successfully implanted bladders grown in the laboratory from patients’ own cells into people with bladder disease. The team is now working to grow organs including hearts using the technique.

Research - Fontan Study Results by the Pediatric Heart Network Many members participated in the Fontan study through their child’s hospital. The study has been completed and the results are online.

Research - CHDs increasing among IVF twins Press release Yale School of Medicine researchers.

Research - Scientists grow rat heart in lab ’The research was funded by the University of Minnesota and the Medtronic Foundation, the charitable arm of a medical company that makes heart devices such as stents and defibrillators.’

Research - For Babies with Heart Defects, Death Risk is far Lower at most Experienced Hospitals Each year, thousands of babies are born with severe heart defects that must be operated on within days or weeks of their birth. And though the odds for these infants are much better now than they were even 10 years ago, a new study suggests that there may be a way to give them an even better chance at living: Get them to the hospitals that are the most experienced at handling such cases.

Research - MIT grows beating heart tissue ’Researchers at the Massachusetts Institute of Technology reported yesterday that by using cells harvested from rats, they have grown dime-size swatches of heart tissue that twitch like a beating heart when an electrical current passes through.’

Research - Neurological outcomes Study by CHOP suggests that cooling technique does not impair neurological outcomes

Research -Neurological Outcome - Heart Defects in newborns linked to brain abnormalities The brains of full-term infants with congenital heart disease look like those of premature babies, researchers here said. Delays may be a result of the brain abnormality and not a result of the open heart surgery.

Research - Neurological Outcome - No drop in IQ seen after bypass for child heart surgery ’The use of cardiopulmonary bypass does not cause short-term neurological problems in children and teenagers after surgery for less complex heart defects, 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.’