My son was one of the 1 in 100 born with CHD. I had never even heard of it until my son was born with a broken heart. People need to be aware of the most common birth defect, and most deadly. Suzy Cassel-Yanez

I am a 39 year old born with a complex chd... I am beating the odds, but many do not. Thanks to a cardilogist that was (and still is) ahead of the times in his thinking, I am doing well. I think it is importnant to spread the word about CHD to EVERYONE... This is a topic that does not get the attention that it deserves... It is shadowed by seeming more visable, or more seemingly life threatening diseases. CHD is in deed life threatening no matter how healthy a person may look....

I'm a mom of a child with CHD and group ccordinator for Mended Little Hearts in the SIoux Falls area. We definately need more awareness on CHDs. I'm amazed at how many parents I talk to that have children with various heart defects. Let's get more awareness out there for families and create some opportunties for research to find cures for these amazing kids!

My daughter was born with rare form of Congenital Heart Disease called Pulmonary Atresia with Intact Septum defect and Hypoplastic Right Heart Syndrome. I knew nothing about a Congenital Heart Defect's until the day she was delivered. Are world was turned upside down. Only moments after being born she was rushed to another hospital to have her first heart surgery to save her life. Half the children born with her defect don't make it to see their first Birthday. THERE'S NO CURE! THIS IS SOMETHING THESE CHILDREN WILL HAVE TO FACE THE REST OF THIER LIVES! PLEASE HELP RAISE AWARENESS! * CHD'S ARE THE #1 DEFECT * TWICE AS MANY CHILDREN DIE FROM CHD'S EACH YEAR IN THE U.S. THAN FROM ALL FORMS OF CHILDHOOD CANCR COMBINDED * ONE OUT EVERY 100 OR 40,000 ARE AFFECTED EACH YEAR

My husband and I were caught completely off guard when our daughter was diagnosed with a CHD called Coarctation of the Aorta. She was three days old when we found out that our lives would change forever and she was six days old when she had heart surgery. It is so sad that so many children go undiagnosed and nobody knows there is a problem until it is too late. There needs to be more funding put into research and awareness of this #1 killer of babies!

My son is 1 of 100. He was born with Transposition of the Great Arteries and had surgery when he was 8 days old. Like most people, I didn't know CHDs existed until he was born. I know now just how many children are born with a CHD. There are at least 35 different heart defects, but all are different and effect the children differently. People need to be aware of the #1 birth defect and cause of death from birth defects. These kids may "look" like there is nothing wrong, but people don't see the struggles so many of our children have. The lives of families of children born with CHDs are changed forever. The constant fear of common colds, the flu, strep, a dental visit, a simple surgery procedure (tubes in ears), become major ordeals for the children and their families. Please help raise awareness. Kim Baratz, Mended Little Hearts of Oklahoma City, Coordinator

I agree that there is not nearly enough awareness of Congential heart defects. My son was one of the lucky ones that was diagnosed prenatally. His diagnosis is HLHS (Hypoplastic Left Heart Syndrome), or no left function. At birth he underwent his first open heart surgery, then another at 3 months. He is now in need of a heart transplant. My heart breaks for the little ones that go undiagnosed. There is just not any awareness out there. More than childhood cancer (which is very close to my heart), Down Syndrome, more than any other defect... is Congentital Heart Defects. What a great show to discuss the signs to look out for in your own child, or infant. I would be 100% on board to share our story if interested. Http://owensheart.com Thank you, Andrea Simmons andreanicolesimmons@hotmail.com

Right now I am with my son in the cardiac unit at Children's Hospital Boston. He is 9 mos, we have spent aprox 6 mos in the hospital with him. Going through this now, meeting so many affected people with chd's , so many wonderful nurses and doctors dedicating their lives to pediatric cardiac care I can't believe there is not more awareness. My son has a severe heart defect. We are going to do his second surgery soon. We feel very lucky with news we received today that his heart can go to the next surgery. Just in the past month, many babies I have known recently passed, so our news is bittersweet. We are hope our Jasper continues to be one of the lucky ones. www.babyblogs.com/jasper

I totally agree. We live in WV and my OB was very thorough with his sonograms. Everyone, especially couples trying to have a baby should be made aware of CHD. We were fortunate to find out in my 4th month of pregnancy that Jacob had Tricuspid Atresia. This helped us prepare (if you can ever prepare for something like this) to face the upcoming surgeries and care taking of our precious little boy. Cincinnati Childrens Hospital (where he has had both surgeries) is one of the top heart hospitals in the nation and they helped us deal with all that was thrown on us so quickly. Everyone needs to be aware that this is a killer if not caught in time. It is sad to know that the babies that aren't diagnosed in the womb won't make it through their first year. LETS GET THE WORD OUT!!!!!!

My son was born with Hypoplastic Left Heart Syndrome. Some conditions like HLHS are now being treated in the womb. Babies that would otherwise have been born missing the left side of their heart are now being born healthy, but it has to be caught early and not all women get the kind of prenatal care or ultrasounds necessary to make this happen. I had prenatal care and 3 ultrasounds and no one saw that my son had only two normal chambers. Normal ultrasounds often fail to give a complete picture of the heart. All pregnant women should receive equal prenatal care and 3-D ultrasounds. Even if surgery in utero is not an option, just knowing about the condition before the baby arrives gives the family time to cope with feelings and learn about the condition and prepare. My son would have had less complications if we had known about his condition. We could have been at a hospital with a pediatric cardiothoracic surgeon. Instead he was life-flighted to another city and while waiting for proper diagnosis his kidneys began to fail, but he was lucky enough to have an amazing surgeon and team of doctors and nurses and is now a thriving 8 year-old who wishes he could play football. Awareness is the key to help these kids have a chance to grow-up.

please please help us educate people about chd so that we can not only educated parents that will be faced with this, but also get the funding needed to research treatment!

Congenital Heart Disease is the number one birth defect in all infants; resulting in 42,000 infants each year. It is time to raise awareness of this issue so these parents and children get the respect that they deserve.

Did you know you can live with just half a heart? My son essentially is. He was born in April of 2008 with hypoplastic left heart syndrome. He has undergone 2 open heart surgeries. One at 6 days old and another at 5 months. He will need a third surgery when he is around the age of three and most likely a heart transplant down the road. Unfortunately his defect couldn't be fixed but doctors were able to change the way the blood flows through his heart so he is able to live with the right side of his heart doing all the work. Prior to my son being born I had never even heard of congenital heart defects even though they are the most common birth defect. I feel very lucky that doctors were able to save my son through the series of surgeries he has/will have. You would never know by looking at him that he has a heart defect. He is full of energy and smiles!

I had 2 healthy children and then had my 3rd child to be diagnosed with a severe CHD before she was born. More needs to be done to bring attention to this horrible disease.

Being a nurse and a mother of a daughter that was born with HLHS. I do not believe that there is enough awarness about these defects and the prognosis of them. I believe in my heart that if we would have had more money going to research of pediactric patients. My daughter would be alive today. she passed away at the age of 3 yr old and had been through more in her little 3 years than most adults go through. We lost her due to complications of a heart rythm post op. She esentially had a 15 hour heart attack and was put on the heart/lung machine until she finally just could not fight anymore. It is devestating to sit a watch your child die slowly and there is nothing you can do about it! better yet how do you go on and live your life with such a void, and how do you explain to her sister that is only 14 months older that she will now be a only child! As you can tell by my post I am still BITTER about losing my child and life is lived day by day minute by minute! It's been 2 years and it the pain is still so raw. I constantly sit back and wonder about the what if's????If she would have been 10 pounds heavier she could have recieved a Berlin Heart, but guess what those are not approved in the US. I want awareness spread and I want those parents out there to have the answers that I am not able to have.....PLEASE HELP SPREAD THE AWARENESS!!!!!!!! ~Misty Humphreys mommy of angel maci forever 3 yrs old HLHS www.carepages.com carepage name: macimommyslovebug

Please help to educate people about the #1 birth defect CHD. As well as help with funding in order to research and develop better treatments for these little ones. Thanks!

Please help educate educate more people about CHD. It affects 1 in 100 babies. We hear about when it touches our lives. More specifically HLHS. Watching a family I love lose their 3 year old daughter to this monster was devastating to me. I cannot begin to imagine the devastation they suffer. If we had only known before she was born....Please help us bring CHD into the light; so that the treatment can be done while the baby is in the womb and no more families have to suffer burying their baby because of this monster.

My son went undiagnosed for two weeks until we were shocked to learn at a two week check up that he had life threatening congenital heart defects. He was born with D-TGA, DORV, VSD, Pulmonary Stenosis and a Right Aortic Arch. He has undergone two open heart surgeries already and faces a lifetime of more procedures.surgeries. His future is uncertain as most CHD kids are but we have HOPE. Awareness for CHD is so desperately needed since there is NOTHING out there. We had no idea about CHD until it happened to us. There are far too many babies going undiagnosed and for some it is too late. Five other moms and myself started a letter writing campaign to raise awareness in the media for CHD. We collected 300 letters from families and have created a website where some have been posted. Http://www.ourlettersofhope.com We mailed letters to various media outlets and are still waiting for a response. We hope that the voices of these families will not go unheard! I REALLY hope they do a show on CHD. The facts need to get out there and our children do not deserve to remain victims of the heart disease.

my daughter was born with Transposition of the Great Vessels. I had a normal pregnancy until my 24 wk check up my doctor had done a routine ultrasound and mainly was focused on the heart. Having some medical background I knew something was wrong. He sent me to a specialist to confirm what he thought might have been a heart defect. The specialist confirmed that is was A-V canal Defect and that she would have a 60% chance of having down syndrome. Immediatly I had the option to have an amino to rule it out. Test came back all chromosomes where normal. Toward the end of my pregnancy they were considerned saying that my baby was extremely under weight at 36 wks gestation she weighed 5lb 9oz whiich is not that bad in my own opinion, to top that off they also said she had a really high risk of being still born. I was induced at 38 wks 5 days. She weighed 6lbs 9oz. She was immediatly taken to Riley Hospital for Children in Indianapolis, I was in the ajacent hospitial so that I could leave at anytime to see her. She had an echo done the morning after birth, the doctors seen somethings they didn't like, came back done another of which we were sitting right there. And he said "well I was wrong" .... She had a Cardiac Cath done that day to make the whole in her heart bigger, was given prostoglandins. She then had open heart surgery at 8 days old. The surgeon said that she still has a small ASD but if it doesn't heal over time they can go in with another Cath and fix it. As of right now she is off the lasiks and has to take 1/2 a baby asprin a day for another 2 months. I pray that they will make people more aware of what CHD is, and maybe a support group to talk with other families in the same situation. Jennifer ~ Mother of Two Angels ( Austin 2yrs old and Kaylyn 2 months old)

I came across this from a heart mom at the Baby Center heart group for babies and children. I couldn't wait to vote because CHD is a #1 defect in babies and yet noone is talking about it. Over the long labor day weekend, $60.5M was raised for MD with the help of Jerry Lewis (http://www.mda.org/telethon/). I was left puzzled; the CHD community seems to have been left behind once again. Granted the MD community needs the funds, I couldn't stop thinking out loud - FOR GOODNESS SAKE, WHAT WOULD IT TAKE FOR OUR VOICE TO BE HEARD??. Our CHD community needs to have a re-known spokeperson to represent our voice, just like Jerry Lewis is to MD, Jenny McCarthy is to autism etc... Is there anyone out there for us???????? Here's our story in short: At 6 months of gestation,our baby boy was diagnosed with Ebstein's Anomaly; by the time he was born, he was diagnosed with Severe Pulmonary Stenosis, Tricuspid Valve Regurgitation, Enlarged Right Atrium. He was not expected to survive past 6 weeks old. This combination of heart defects makes a rare case, and noone knows why it is the case. This goes for ALL CHD BABIES. You can follow his journey with CHD at: http://tchin.org/portraits/andre-1.htm As I travel my journey with raising our baby boy born with CHD, I hope that our voice will be heard sooner rather than later, so that more babies have a chance to live past their first birthday by new procedures through ongoing research, so that more parents are aware of this defect through mandatory newborn screening, so that we, as parents, can be better educated as to where we go from here, so that better support can be provided through difficult times at pre-hospitalization, hospitalization and post-hospitalization. Mom2Andre Please follow Andre's Medical Journey at: http://andreswalkwithchd.blogspot.com Please follow my journey at: http://mom2andre.blogspot.com

It pains me that there is so little awareness of congenital heart defects. Before my daughter was diagnosed with a CHD while I was 19 weeks pregnant, I had never heard of them. My daughter had open heart sugery at 4 months old and thankfully, is doing wonderfully post-op. I hope that The Doctors can use their viewer base to bring awareness to the #1 birth defect that kills 5 times more children than all pediatric cancers combined. PLEASE PLEASE PLEASE shed some light on this topic. If I can help out in any way, I will - my daughter is a true CHD warrior and I am doing all I can to make this journey mean something.

please consider doing a show on CHD, there are more deaths in children with a chd than all forms of cancer combined!!! We need to get the word out! I am a mom to a child who has been classified as a hospice patient most of his life due to the fact there is so much unknown out there about his particular type of chd, dialated, left-ventriculat non-compacted cardiomyopathy. http://www.caringbridge.org/visit/cj08

More children die every year from CHD than other childhood illness. Our son survived, we are thankful every single day for that.

My son is yet another child that was not diagnosed inutero with a chd, Transposition, to be specific. I agree that it is shameful that the number one birth defect affecting children gets virtually no mention in the media. 1 in 100 children will be diagnosed with a chd. There is no "cure" for most chd's. Surgical procedures can patch the problem or buy time before transplant or another surgery, but most defects are considered "patched not cured". Please consider doing a show on the impact of chd and life long issues children face. My son is excelling in school at this time. He has had three rounds of occupational therapy, counseling, and anxiety related to his appointments, prognosis, etc. Please help us educate others about chd.

I have wondered if a show on CHD would ever be done. I know I've seen a segment about a little boy who had heart surgery, but a whole show highlighting CHD could be very informative, not just for people who aren't affected by it, but even for us who have a CHD. In my family there were 2/2 born with CHD. I'd like to see not only parents dealing with their children, but how the children who have grown up and are now adults living with CHD are coping and dealing with everyday life.

I believe that more awareness needs to be made to the general public showing that anyone anywhere can have a child with a heart defect as it is the leading birth defect occurring in 1% of all children. Something as simple a doing a pulse oximetry and blood pressure check on every newborn can help prevent children from leaving the hospital after birth undiagnosed. Check out http://www.savinglittlehearts.com/?id=301 for more info.

Absolutely agree a show in the topic of Congenital Heart Disease would be excellent. Here's the issue in a nutshell. Congenital heart disease is the #1 birth defect in the United States. When you say that though, what do people in this country automatically think of? Heart disease is heart attacks and strokes, right? Well, that’s not right. We need to make the case to the world that there are TWO kinds of heart disease (acquired and congenital) and that both need unique lifelong care. Many don’t understand that congenital heart disease defined is a heart malformation present at birth. Think of the heart as like a house where there are rooms (chambers of the heart), doors (the valves) and hallways (the arteries and veins). Congenital heart defects are really just a problem with the layout of the heart---the doors, halls and rooms can be misplaced, malformed or even absent, there can be extra rooms or halls or even holes in walls or walls missing. So this is much different that what most people think of as heart disease (heart attacks and strokes). I would tell the public to think of “regular” or acquired heart disease as a problem with the gas supply coming into the house (for example the line that brings oxygen to the heart muscle is clogged with plaque and blood clot). Both kinds of heart disease deserve prevention messages because children with congenital heart disease need lifelong specialized care and so many do not realize that they can stay healthy as they move into adulthood even though they have had reconstructive surgery for the layout of their hearts. There is no question in my mind that cholesterol, smoking, high blood pressure education is important for heart disease prevention and my congenital heart disease patients need that message too, but they need another about lifelong care specialized care for ADULT CONGENITAL HEART DISEASE (ACHD) that we are not yet delivering in a full blown way. We know there are 800,000 children and 1 million adults in the United States today. Children and families need the message of hope and they need to know that there are folks who can and should see them in adult life as certain more complex defects really need to be seen by an ACHD Center on a regular basis. Some patients may be seen by the local cardiologist and seen at least once by an ACHD Center in their adult life. Check out: www.achaheart.org www.pennstatehershey.org/pachd Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. -Margaret Mead US anthropologist & popularizer of anthropology (1901 - 1978) MJNickolaus, CRNP

I was born in 1976 with D-TGA and VSD. A show about CHD is a great idea. I'd like to see a show that covers different areas of the issue, from the CHD babies and their parents, to kids playing with their friends and being kids, to us adults living with CHD. Including information about the lifelong care we require (pediatric cardiology and Adult Congenital Heart Disease specialists) and the issues that go along with CHD (developmental problems, chronic illness, social isses...etc.) would also be a big help. There are so many unknowns that we have to live with in addition to the general ignorance of this condition. Raising awareness would go a long way toward saving more lives and extending the lives of those of us who live with it. I think all of the CHD comments from the different topics should be combined into one topic. ALL of our voices must be heard.

When I was 20 weeks pregnant we found out that our son Mikey had Tetralogy of Fallot – a CHD that involves four specific malformations. At 11 weeks Mikey had open heart surgery to affect a “full repair” of the critical defects. This will require life-long maintenance. As I tell Mikey's story I find that someone always know someone with a CHD. It is the number one birth defect. The science has come such a long way now the Adult CHD community out numbers the children. Therefore, there is a whole new area of science which has yet to be explored. There is so much to discuss that one hour might not be enough. Please help spread CHD awareness, it touches so many people.

My 3 year old daughter Amiyah was born with a CHD, a very complex case...Tricuspid Atresia, D-Transposition of the great arteries, IAA, and VSD. She has been through the 1st two stages, and because of an increasing number of growing collaterals and high lung pressues, the debate is on whether or not she is a candidate for the 3rd stage. I believe that awarenees is necessary, as I too like many other parents would have never even believed that this critical disease was affecting so many of our children. I never even thought of a child having open heart surgery! She is a blessing to us and I hope that awareness can be increased across the board!

As an adult survivor of a complex CHD, It is my opinion that much more information about adults living with their CHDs, needs to get out into the mainstream. We have survived our childhood and are walking, working and living among you. But, we continue to have health problems and are sometimes limited in our work and play life. We constantly worry about discrimination in the work place and often have a very hard time getting and affording health insurance. In my experience, most of the attention is always on babies and children. But once they're not cute little babies anymore, no one seems to care. Education of the general public is long overdue!!

Just got an update... It was for GROUP and we were trying for an individual policy....

My son was born with a Congenital Heart Defect called Hypoplastic Left Heart Syndrome. I agree that there is a lack of Awareness on CHD's even amongst the medical community. When my son was diagnosed in Utero with HLHS. I was told that his chances of survival were very slim and his outlook on life grim. I was even told at 20 wks. that there was still an option to terminate my pregnancy. Unless you go to a Major Heart Center like The Children's Hospital of Philadelphia you will not receive the correct information. The statistics most doctors have is dated. We need to let people know that there is HOPE for our children. My son, Jaden just started 2nd grade and is doing very well. He plays in Little League and is enjoying life. Please help us spread Awareness!

More awareness needs to be made surrounding CHD so that more money and research can go in to finding out what the causes are and how we can prevent

I am adding my voice. I too, had never heard of CHD until it affected me. I found out when I was 22 weeks pregnant that my son had an extremely rare form of congenital defect called heterotaxy that caused left atrial isomerism and other severe, and complex CHDs. He passed away when he was 2 months old, to the day, as a result of his cardiac defects. I can only repeat what others have said. CHD is a serious issue. It is the #1 birth defect, #1 cause of infant and child mortality, affects upwards of 40,000 people every year, and there are more and more adults every day with some form of CHD and no medical community to support them. We have made advances in research and treatment, and the mortality rate has been reduced by 30% in the last decade, there is so much more that needs to be done for this serious, ignored, and underfunded health issue. We know so little about how to prevent and treat this disease. There is no feasible, cost-effective way to screen for CHD, and as a result many are not diagnosed until it is too late, or earlier intervention could have made a difference. I was one of the lucky ones to get a prenatal diagnosis, and that was only possible because of the extreme severity of my son's defects. It can happen to anyone. It needs more attention. We need to do better.

Actually nowadays, the vast majority of children with heart defects live into adulthood. But children and adults with heart defects (like me!) need follow up care throughout their lives, even after full repair of their defects. Unfortunately, many don't know they need regular care, and get lost to follow-up. Also sadly, the US lags behind Europe and Canada in keeping track of potential complications. We need a federal registry to keep data, becuase no one knows what will happen to our hearts as we get older. This is a great topic for a show. I hope they do it!

My son had open heart surgery to correct his heart defects. He was 8 days old. At 2 and a half he went into complete electrical heart block and had to have an "emergency" dual chamber pacemaker put in. 3 months later the pacemaker slipped into his abdomen and a wire broke. He went in for his second surgery for that. He is now almost 4. He will be followed for the rest of his life. Thankfully, because of medical research, he has a long life ahead of him. These stories, happy and sad, should be heard. CHD hits anyone, no matter what their background is. It effects innocent babies who learn to deal with such an amazing journey when they are only days old. CHD creates strength in people that didn't know they had it in them. These stories should be heard. Treatment for CHD's has come along way since the first open heart surgery to repair a congenital heart defect. A test was done to confirm our son's syndrome, his cerebral palsy, his heart block, and his severe speech delay...the test that confirmed his heart defects and other birth defects was a level 2 ultrasound, but not every pregnant woman gets this level.

I would love to see a show about CHD! My son was born in May 2008 with Double Inlet, Single Ventricle. I have never met another parent who has a child with this defect, and I have not been able to find his defect in any of the books I have. I had 3 perfectly healthy children before him and was shocked to see that he was completely blue at 14 hours old. My son has had 2 out of 3 open heart surgeries and we have begun monitoring his O2 sats to determine when his next surgery will be. I recently had another baby, and when I had the transnuchal lucency ultrasound done I was told that there was a thickening that gave us a 30% chance of a genetic birth defect. I was also told that there are studies being done to see if the thickening on the back of the neck could be an indicator for CHD, and that there was a possibility that this baby would have a heart defect as well (everything was fine with my newborn). I would love to learn more about this and have been wondering how serious the tests have been to find out if CHD can be detected earlier with the transnuchal testing. There are so many ways the heart can be formed and so many different CHD's that I think you would be able to devote an entire show to Heart Defects. I would love to share my son's story with you and you can read about his journey on my blog http://ourhappynuthouse.blogspot.com/ Thanks, ~Lisa

My daughter was born with a CHD. It went unnoticed until she was 10 years old. An ER doctor discovered a murmur when he was checking her for strep. We were so fortunate to have found the problem. She has open heart surgery over a year ago and is doing well. Without the surgery, she may not have lived to be in her 30's. Please help raise awareness for CHD's. Maranda

Until our son's diagnosis of Truncus Arteriosus at 8 weeks of age, the world of Congenital Heart Defects was not only unfamiliar to us; it was unheard of. It was not that we underestimated the importance of this vital muscle; we were just naive enough to believe that either the heart worked or it did not. Pregnancy books did not talk about it. Neither did the books that contained the vital information for caring for our son in his first year of life. We did not see telethons raising money for research nor did we see campaigns to raise awareness for CHD. We did not even fear his first echocardiogram because we did not have any comprehension of all that could be wrong. After all, we were handed a gorgeous baby with ten fingers and ten toes who they let us take home from the hospital. Our rationale was that they would not have let us take home a baby that had a life-threatening birth defect. It would or should have been caught. Now that the world of CHD is a very big and very real part of each day of our life, we are left with only one repeating thought: we don't understand and further more, we just don't get it. Statistics show that one out of every 115 babies is born with a congenital heart defect. One out of every 115! Yet, babies do not get prenatal screenings and they are not screened prior to leaving the hospital for a CHD. In comparison, one out of every 800 babies is born with Down's syndrome and one out of every 1300 is affected by Spina Bifida. Our intention is not to underestimate the significance of these conditions or the alpha-fetal protein test. But wouldn't it seem logical and beneficial to routinely screen newborns for a CHD? Some children's heart conditions are discovered during routine sonograms but because technicians do not receive specialize training to recognize heart defects many aren't discovered until the child is in severe congestive heart failure, as Cole was, or they have coded. Too many babies are fighting a fight that has been made much harder than it needs to be. In the U.S. alone, nearly twice as many children die each year from congenital heart defects than all forms of childhood cancers combined. There are over thirty-five known types of CHD and it is the number 1 cause of birth defect related death in infants each year! Awareness needs to begin today.

I was born with a congenital heart defect. Its so sad that no one knows about them. There needs to be awareness

It still amazes me that so few people even realize that children (and lots of them) suffer from heart disease! What frustrates me about that is people assume that Mom or Dad did something to cause it when the reality is that so little is known about the cause. My son Colton was born in 2003 with an ASD, a VSD, a PDA, and D-TGA. Even the physicians were surprised that the heart defects were what caused his breathing difficulty immediately at birth. He was transferred to a skilled NICU with the diagnosis of Respiratory Distress Syndrome. His heart was not suspected as the problem until several hours later. We were one of the lucky families being diagnosed as quickly as he was. We are so very fortunate that he is doing as well as he is right now, but he has a lifetime of battle ahead of him. We will be addressing the need for a pacemaker again in the next month. His defects have been mostly repaired, but even his long term prognosis is unknown because the repair technique has only been around for less than 25 years. We have the power to make change in this world-let's start at the heart of the matter! Andrea Sullivan Mended Little Hearts of Chicago www.carepages.com/coltonjohn

I would love to see more awareness about CHD's. My son was born with Pulmonary Atresia in 2005. He has undergone 1 OHS and 2 caths, there will be more OHS in his future. I did not realize this was the number one birth defect until my son was born with one. 1 in 100 babies is way to many for no one to know about it until it happens to your child.

I was born with a CHD but did not get diagnosed till I was 35! I had surgery in August at UCLA by DR. Laks! I have coarctation of the Aorta which should have been repaired as a child. The awareness is needed this is coming from a someone who who was pushed aside for so long. Thank you UCLA

My family was not aware of how common CHDs were until my unborn daughter was diagnosed with hypoplastic left heart syndrome (HLHS). I believe it would benefit everyone to understand how common these heart conditions really are and to encourage people and the government to provide more funding to the research and treatment of these CHDs. My daughter is due on September 21st...although I am sitting at the hospital on bedrest right now, so she may come a little early. Feel free to follow along on our journey: http://wodzisz.blogspot.com/

When I was 20 weeks pregnant we found out that our son Mikey had Tetralogy of Fallot – a CHD that involves four specific malformations. At 11 weeks Mikey had open heart surgery to affect a “full repair” of the critical defects. This will require life-long maintenance. As I tell Mikey's story I find that someone always know someone with a CHD. It is the number one birth defect. The science has come such a long way now the Adult CHD community out numbers the children. Therefore, there is a whole new area of science which has yet to be explored. There is so much to discuss that one hour might not be enough. Please help spread CHD awareness, it touches so many people.

MY son who is now 11 was born with tetralogy of fallot. I had never heard of it until he was born. He has had a stint placed at 10 weeks and a full repair they had to go on and do Apr 13 99 (a little over 2 mos shy of his first bday) because the pulmonary stenosis was so bad. HE was treated at Texas Childrens Hospital by Dr McKenzie and Dr Frasier .

My daughter was 1 in 100 too. This is a scary situation, especially when you have no idea there is something wrong. By the grace of God, my daughter had a fever that kept her in the hospital. There is no explanation for that fever, but it saved her life. If she hadn't had it, she would have come home with me and I would have lost her when she went into respiratory distress in the middle of the night. Looking back, I can see she was a blue baby, but no one noticed it then. She is almost one now and doing great, but others are not as lucky. I agree with the comment about Down Syndrome. Many times this isn't life threatening, but a heart defect is. If it isn't discovered early enough, the child can have more defects, and die.

My daughter is also one of those 1 in 1oo babies born with a heart defect, in fact she was born with 3 of them. We had no idea until she was 2 months old and then it took 8 more months for the doctors to determine exactly what was wrong with her heart. She was born with coarctation of the aorta (she had surgically repaired), ASD, and a bicuspid valve. She is now 6 and doing well. However, this past summer the doctors did discover that she now has a dilated ascending aorta. As a parent, you are constantly wondering could I have done something to prevent this or wondering if you did something wrong when perhaps when you were pregnant that caused this. I feel that there should be research and more screening done to help prevent or at least make parents more aware of CHD's.

My son was born with CHD, Pulmonary Atresia, Tetroligy of Fallot, and DeGeorige Syndrome. We knew nothing was wrong until the night he was born when he turned blue, all through the pregnancy we didn't see any abnormalities in the ultra sounds, and the heart beat sounded normal. After he was born the doctors basicly told my husband and I that he wouldn't make it past 3 months and if he did he defanitly wouldn't make it past 1 year. When he was 1 1/2 they did heart surgery to fix some of the issues that come along with his CHD, last May he celiberated his 3rd birthday. Thanks to Texas Childrens Hospital and his peditritian. This is my husband and my first child and as new parents already worried and scared about being parents had this piled on top of us. I thank god for It's My Heart and their support.

My daughter, Emma, was born with tetralogy of fallot and pulmonary atresia. She is 2 years old and doing great, but it was a long road to get here. She also has pulmonary hypertension which makes her heart work that much harder. Any light that can be shed on this disease would be great.

Our son Elijah was 1 out of 100 born with a CHD called Hypoplastic Right Heart Syndrome. We spent 6 months at Children's Hospital Boston, he had a total of 4 open heart surgeries (3 days old, 1 month old, 3 months old, and 7 months old) and passed away at only 8 months old. We found out about his heart defect when I was 22 weeks pregnant and knew NOTHING about this disease or have even heard of it. My hope for him and other families affected by CHD's is that there will one day be more awareness for it and more research.

I was one of the many people who are unaware that CHD’s are the leading cause of death from birth defects until my unborn son was diagnosed with several complex congenital heart defects (Hypoplastic Right Heart, Tricuspid Atresia, ASD, VSD, Small aortic valve) in utero last September. Today up to 1.8 million Americans live with a CHD. Yet, of every dollar the government spends on medical funding only a fraction of a penny is directed towards CHD research. During the last 7 months my son has undergone 2 successful open heart surgeries with a 3rd surgery planned to take place next year. He will live the rest of his life with a single ventricle heart (half a heart). We don’t know what the future brings for any of the children born with CHD’s but they are all with us today because of the research done in the past. PLEASE HELP us bring awareness to this subject so they can have a very bright future. You can learn more about my son’s story at www.clinkscalesfamily.blogspot.com. Thanks so much for considering CHD’s as a subject for your show. Catherine-Mom to Cain

My daughter Blakely now 17 was born with TOF. She has undergone 3 OH surgeries and has had PV replacement. She was my first child and I was scared to death, the ultrasounds never picked this up and we didn't have any idea of what we were in for. This is a subject that needs to be addressed to the public and not wait until it happens to you or someone you know to bring it to light. My wish is in the future that no other baby and family has to go through this. It effects every aspect or your life and it doesn't end with surgery. Please help get the message out there. Kelly Turner Dodson

YES to awareness on CHD!! I have another heart baby to add to your list. My beautiful daughter, Bentley (www.youandmeplusthree.com), was born in August of 2008 with a heart condition called Tetralogy of Fallot. We were not expecting this at all, in fact.. our down syndrome screening came back abnormal so we had several more ultrasounds with higher level machines looking at the special markers for down syndrome.. one of them being the heart. I cannot tell you how many times they stressed how strong and text book her heart was during these ultrasounds. They were amazed every time. She was cleared and once born confirmed she did not have down syndrome... But a heart condition was the last thing we had in mind. Not that it would change anything if we would have found out then, but we could have begin preparing ourselves for our new heart journey. Which is a big journey, not just for the child.. but the parents, siblinings, grandparents, everyone!!! It is life changing. There defintely needs to be more CHD awareness... it is sadly underfunded. If it had the exposure all other medical conditions have, then 10 years ago it could have been well funded and we could be even further along in the fighting or treatment process. Our babies now, could have possibly had caths instead of surgery. So now it is our jobs to push this topic and get it out there and funded right there along with the others. So just maybe 10 years from now the new heart babies will have better treatments. With that said, we have been very blessed with Bentley and her heart. She had her 1st open heart surgery for her complex heart defect this past May and it went well. She was in the hospital for only 8 days and blew everyone away. We are so grateful for that. We just celebrated her 1st birthday last month. I started my blog when Bentley was 5 months old to keep family updated. We were overwhelmed with the mom blog community that reached out to us and lifted us during this difficult time.. I still have many new readers that are new heart moms looking for support and hope from other heart journeys. (just as I did and do) Crystal - Bentley's mom (TOF) www.youandmeplusthree.com

I think a show to bring up awareness of CHD is a awesome idea. Until I was blessed with my handsome little son, who was diagnosed at 8 days old, the day my life changed forever. I had no idea how many babies are born with CHD. I think you guys would do a great job of spreading the word about this heart felt topic. I meet so many people who have no information on congential heart defects, as I was when my son was born. My son just started Kindergarten and we consider ourselves very blessed and I hope that by helping spread the word, we will be able to open up the awareness of CHD and that there will be more funds available to help research the future for our children.

My daughter was born with transposition of the great arteries, and had 1 surgery at 6 weeks and another at 2. She is 8 years old now and doing well, but you never know what the future holds!!! I would like to see this topic addressed and out there so my daughter can have the best chance at life as possible.

My two youngest daughters, Aislinn (now 5) and Johnna (now 2), were both born with heart defects. We knew when Aislinn was born and she eventually had to have open-heart surgery when she was 2. It was one of the hardest things that we have ever had to go through. When I was pregnant with Johnna, we had testing done to make sure that she did not have a heart defect since the risk was greater. There needs to be something better to find these defects. Our daughter, Johnna, did in fact have a heart defect, TAPVR. Her condition was very rare. In January 2009, when Johnna was 19months old, she got really sick. I took her to the pediatrician. She was admitted to a hospital with a possible respiratory infection. She actually was in heart failure and was life-flighted to Rainbow Babies Hospital in Cleveland, Ohio. She underwent open-heart surgery and is doing much better. It was just such a shock to us though. We thought that she was okay when I had neonatal testing. I cannot believe that we have gone through this twice. We are so very fortunate though, because there are parents out there who are not so lucky to still have their children.

My son was born with Truncus Arteriosis, ASD and a VSD. I was told by one of the nurses that up until about 10 years ago there was no cure for this. There needs to be more awareness and money for research on CHD. Paulette Griffin

My daughter has been diagnosed with Hypoplastic Left Heart Syndrome at 20 weeks in utero. We have struggled with infertility for four years. After five IUIs, several surgeries, 7 cycles of invitro fertilization, multiple procedures and a bout with fifths disease, we finall y got the call on April 15, 2009 that we were pregnant. We were overjoyed to say the least, our dream had come true. On April 20th 2009 we found out we were expecting twins. Several weeks later, we found out we were losing one of the twins. At 19 weeks we found out we were having a little girl. The plans that we have made for her and us have started from the day we found out we were pregnant. she is our dream come true. At 20 weeks we found out she has only the right side of heart formed and left did not. The doctors say she will need several open heart surgeries to save her life, the first being when she is born. We were devasted to say the least. How could this have happened to our precious little girl. Every doctor we have seen has said to end the pregnancy because of the diagnosis. That was never an option for us. she's a life with a chance. It may be a tough, difficult chance but if she can survive, we owe it to her. Our love for her is more than we ever thought we had to give. In our eyes she is perfect with a heart as big as the world. Any child that can make two people feel the way she makes my husband and I feel has to have a hearet as big as the world. she is due December 17, 2009 and plan to give her the best care we can and a whole lot of love and hope. she is God's gift from above. We need to spread awareness about CHD and Hypoplastic Left Heart syndrome because until our little Ava Grace was diagnosed we had never heard of it. We were uneducated and uniformed.

Our son was born with Tetrology of Fallot. He had his 1st surgery @ 9 months and 2nd @ 2 1/2. When he was 3 he contracted MRSA which broke down the graft in his heart and had to be flown to a hospital in another state for emergency surgery. There was a very low prognosis... 10 to 15 % that he would live. By the grace of God and a fabulous team of doctors and nurses at Nationwide Children's Hospital in Columbus, OH he is alive and well today and even plays on a soccer team. He also has 3 stents. We know he will have to have at least 1 more surgery but they are trying to hold him off till he is much bigger. He is 8 years old now and we just celebrated his 5th anniversary since his life was spared! Thanks for listening... I could write a book about it! Susan

Things are getting better for CHD, but, we still need greater awareness for this and other things our children are facing. Congenital Cardiovascular Defects: Statistics 3,637 people in the United States died from congenital cardiovascular defects in 2005. At least 15 types of cardiovascular defects are recognized, with many additional anatomic variations. Thousands of babies are born each year with cardiovascular defects. Of these, 4–10 percent have atrioventricular septal defects. 8–11 percent have coarctation of the aorta. 9–14 percent have tetralogy of Fallot. 10–11 percent have transposition of the great arteries. 14–16 percent have ventricular (ven-TRIK'u-ler) septal defects. 4–8 percent have hypoplastic left heart syndrome. About 650,000 to 1,300,000 people in the United States with cardiovascular defects are alive today. 2004 death rates per 100,000 people for congenital cardiovascular defects were 1.3 for white males, 1.4 for black males, 1.1 for white females and 1.4 for black females. 2004 death rates for Pediatric Cancers were 2.7 for all races. Crude infant death rates (under 1 year) are 39.0 per 100,000 white infants and 47.7 per 100,000 black infants. Crude infant death rates does not break out what the causes of death are - this statistic includes other causes besides CHD. It is a crude statistic. From 1995 to 2005 death rates for congenital cardiovascular defects declined 42.1 percent, while the actual number of deaths declined 27.3 percent.

I contacted this show about 9 months ago looking for answers to my son's heart defect. During my lunch breaks I would watch this show, and I thought I wish they would talk about CHD. This show brings so much knowledge of medial issues to millions of people! My son has a heart defect, Pulmonary Atresia, and took months to diagnosis him with a CHD. Without a mother's instinct and doctor’s persistence his heart defect could have gone unnoticed. He has required two open heart surgeries this year alone and we don't know what the future holds. I never thought my baby would be one of those statistics, but he is. I want the world to be educated, and I want more funding to research CHD. Years ago I don't know if there would have been anything that could have been done for my son, but the great knowledge and technology we have today his tiny heart was repaired. I vote and will encourage other people to vote. With your help we can reach out to millions of people about how serious CHD is! Let’s promote awareness for this special cause because there’s no true cure for this!!!

Our daughter was born missing her left ventricle. We believed there was no hope, because there wasn't enough awareness for CHD. Her defect, HLHS, is serious but treatable with a minimum of 3 open heart surgeries before age 5. Sadly, our daughter didn't make it, but many kids are. Despite gradually improving outcomes, we still have too many that have gone before their time. We desparately need more awareness so EVERY baby has a chance and EVERY child has a better quality of life. More awareness means more financial support, more research, and a better, longer life. PLEASE PLEASE HELP! Nancy Brandon mother of Lindsay Brandon, Hypoplastic Left Heart Syndrome June 6 - June 28, 2006 Cincinnati Children's Hospital Medical Center nancybrandon1@yahoo.com

My son was born with Transposition of the Greater Vessels with a VSD. At 5 days old he had open heart surgery. Luckily for us they found the heart defect when I was 7 1/2 months pregnant so it gave us time to prepare mentally (if that is possible). I desperately wanted to be a stay at home mom but with his defect, he has to have insurance. Therefore, I have to keep teaching and have to put him in daycare. I would like for you to air a show on CHD in children to make everyone aware of what is going on. I would have loved to have more information when I was preparing for the arrival of our special boy. I find great sollice in the group that I am in in San Antonio called the Mended Little Hearts. We have meetings once a month and it seems to lift my heart.

My daughter was born 2/5/09 and diagnosed on 2/6/09 with Hypoplastic Left Heart Syndrome,I had never heard of HLHS until then. I think should be much more awareness on CHD the #1 birth defect children are dying from before there first birthday. My daughter Shanyah passed on September 4,2009. I believe if there where more awareness baies would be in more optimal positions when born.Because knowing is half the battle. Please help spread awareness so that people will also help with funding to research CHD's so that children will be able to live and enjoy life. With Heart, Alicia R. Kennerly

In June, 2009, my 7 week-old daughter, Veronica, died suddenly of an undiagnosed congenital heart defect which was discovered on autopsy. I am a physician and I had NO idea that congenital heart disease (CHD) is the most common birth defect and kills more children than all childhood cancers. Prenatal ultrasound misses many cases of CHD, as was the case with me. There is investigation on use of neonatal pulse oximetry to screen for CHD shortly after birth. I think this topic deserves more attention. Producing a show on this issue would be invaluable to the health of children and hopefully prevent others from enduring what our family has. Thank you. Olivia Easley

Please tell all of you family and friends to vote for an episode on CHD. We need all of the support we can get!!! Lisa

Please do a show on this topic. We need to raise awareness to the most common birth defect. I emailed my story to "Ask the Pediatrician" on 2/23/09. My daughter (Taryn) passed away when she was 29 days old January 2009. Her CHDs (TAPVR and ASD) were diagnosed after she coded and went to the hospital when she was 27 days old. This topic should be discussed with all pregnancies. I read so many books to prepare; however, I don't ever remember seeing this information or being given the prevalence of CHDs. blessherheart.org

Please vote for CHD, we need more awareness. The struggle doesn't end, it is a life long defect. We are never fixed, we are only repaired, and most of the time it is just a temporary repair...... We need to let everyone know that there is more to heart disease than "aquired heart disease" Babies are born everyday with congenital heart disease, some of them are lucky to make it to their first birthday let alone adulthood. Please help!!! VOTE, VOTE, VOTE

This would make a good show. I had a nefew who was 25 years old. He went to store to get eggs came home went to walk back to the bathroom and just plain fell over dead. The doctors said he was born with CHD and it just wasn't found until it was too late. He left behind a little boy and a wife. So young , there must be something that can be done to find these things out. ------------ladywithattitude

My son was born July 2000 with a CHD called Hypoplastic Left Heart Syndrome, he has had 4 open heart surgeries and many other procedures. If he had not had surgery he would have died within days or maybe weeks. His 1st surgery was at 5 days old, his 2nd surgery at 7 months old. His 3rd & 4th open heart surgeries were just after he turned 2 years old. He has been doing wonderfully and so far has not needed any more surgeries. But no one knows what the future holds for these children, as the oldest HLHS'er is only in their 20's. But we all hold out hope that the future holds plenty for our children and cherish every moment we have with our children for we know not what the future holds. I am co-owner of www.hopeforhlhs.com & the Yahoo Group Hope for Children with HLHS. My son's website is http://londonsheart.wordpress.com. Rebecca Mobley

My son too was born born with a severe and deadly Congenital Heart Defect called Hypoplastic Left Heart Syndrome. When I was first told I like many others had never heard of these Heart Defects so was completely in the dark. There should be alot more awareness so that parents who get told have actually heard about CHDs. We have been lucky, my 21 month old HLHS son is still alive others aren't so lucky - we hear nearly every month about a child that dies suddenly of their CHD and becomes one of many CHD angels. My son needs one more operation before his 3-stage surgery is complete and that is if he is eligible for the last stage as some children aren't, these children then need heart transplant when they go into heart failure. With the 3-stage surgery, even when it is completed that isn't the end, eventually all children with HLHS and some with other CHDs will need heart transplant (some won't be lucky enough to get a heart due to their not being enough donors). Please use this topic on your show and show people that children and babies can be born with deadly Congenital Heart Defects and even though there are surgeries and medicines these kids are incredibly strong and some do survive.

My daughter is also 1 in the 100 group. She was born with 9 different defects, HLHS being the most serious. She was not diagnosed until she was 2 1/2 months old, which is so incredibly rare that she lived that long undiagnosed. A radiologist, an ob/gyn, a pediatrician, and countless nurses missed her symptoms and sent us home with our "perfectly healthy baby". She has had the 3 surgeries, and she is now an 11 year old joy! She has developed Protein Losing Enteropathy and is on meds for that too. I am in full agreement that more awareness needs to be out there. I also had not heard of CHD until it affected my life. Come on parents....if we can get through open heart surgery on our babies, we can sure do this!!!!

My daughter was born with Tetralogy of Fallot, a four part heart defect. Her left pulmonary artery was also not attached. We had no idea there was anything wrong with her until they heard a murmur. If our pediatrician had missed the murmur our daughter would have been sent home and could have possibly died. She had open heart surgery at one week old. I would love for people to be educated about how common CHDs are and what the prognosis is for these children. Technology has given children with CHDs a chance to live normal, active lives!

My son Gabriel has several heart defects and until he was diagnosed I had never really heard of children having them. More people need to be aware made aware of this. I find it sad and unnecessary that babies are going home from the hospital to only die from an undiagnosed congenital heart defect. More needs to be done in research. So much more needs to be done in awareness also. This is to common of a defect for parents to be blindsided by it as their child is dying or rushed into the NICU for life saving measures. Please consider a show about CHD's and the few adults that are growing into adulthood with defects. Robbin Czerny