Congenital Heart Disease Support Group

Congenital heart disease is heart disease in the newborn, and includes congenital heart defects, congenital arrythmias, cardiomyopathies, and hypertrophic cardiomyopathy (HCM). CHD can describe a wide variety of different abnormalities affecting the heart. CHD occurs when the heart or blood vessels near the heart does not develop properly before birth.

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  • enchantress

    Just joined! Born with HLHS

    I just wanted to say hi. I was born with HLHS (hypoplastic left heart syndrome) I basically have half a heart. I'm 16 and I'm doing great! I would love to hear everyone else's stories!
  • deleted_user

    Hypoplastic Left Heart Syndrome

    I am currently 33 weeks pregnant and my daughter has been diagnosed with HLHS. I've avoided doing internet research throughout my pregnancy, as it has the tendency to make me paranoid. However, the closer to delivery I am getting, the more unprepared that I feel. Is there a parent out there that is willing to talk and give advice?
  • No_ONE

    Bicuspid Aortic Valve Disease

    Everything looks good, TMT test, echo, xray, blood, ECG. Doctors discovered that I am born with bicuspid heart. Its been 2 week that I had last test. Doctor said everything is fine. I told him that I feel pain in my chest around heart, sometimes right side too, he said if I can resist it then resist it and gave me drug called czox. Yesterday I was walking in the street and felt like a pinch in my...
  • charles46healthman

    Cardiomyopathy... is Curable.

    My health story is similar with so many persons that have been diagnosed with Cardiomyopathy. I was a young man of 42 years.The difference though, is that I discovered a safe and natural treatment that has cured me of this heart disease and all of it's life's restrictions. After being diagnosed, in May 1989 and told that there is no cure for Cardiomyopathy and had a few months to live, ( I also...
  • helpmeheart20

    Long QT Syndrome.

    Hi all. Really long post, I apologize. I'm 20 years old and since I was 3 years old I've had faints/mainly seizures. The first time it happened at 3 I had a temperature. Since then I've had a seizure at least every year, apart from once when I went around 2 years without one. Since 3 I've had seizures randomly. However have also had one whilst running (twice) one was a seizure one was a faint,...
  • PaleOxymoron

    I just joined.

    I just made this account.  I was born with a congenital heart defect that runs in my mother's side of the family.  It only shows up when the body is stressed, such as during birth or pregnancy.  My heart valves don't fully close, leading to "regurgitation" (the blood flows backwards).  We also tend to have low blood pressure.  I'm not sure if the low blood pressure is from the defect.  I...
  • rose0908

    Just found out my daugher has DAA

    Does anyone here have experience with Double Aoritc Arch? My daughter was born with a heart murmur. Her doctor caught it the night she was born and sent us to a pediatric cardiologist. They weren't too sure what was going on at first, it was hard to see. She is a healthy, thriving, over achieving ten month old now, they weren't worried about her. Well we went to  another check up this week and...
  • jimpoe

    low blood pressure?

    Hi gang i know most of you know my constant bp problems but I've running low the last couple of months and today it hit all time low 104/58 but it seems that sometimes it drops after eating has anyone had this and should i worry? thanks and god bless.
  • Ricardo101


    Hello everyone,I'm posting to the board hoping I can help someone with heart mumurs or cardiomyopathy. My friend a health specialist is interested in doing clinical trials for the show SHARK TANK.I will gladly share the contact information.Happy Holidays!Ricardo
  • TurdFerguson15

    Bicuspid Aortic Valve Disease

    I recently found out I have this (I'm 35) and started researching it more lately. Is there a risk in being pregnant with this? I've read that most women find out they have this in late stages of pregnancy due to the pressure/weight, etc so I was wondering with my age and knowing I already have it, if it's a risk to even try to carry a baby.Thanks!
  • geeky

    Very short of breath, need advice :(

    Hi all, I'm hoping to find someone to talk to. I'm an adult now (30) but ever since I can remember (child) I cannot read aloud without becoming winded (after a full page I'd be noticeably breathless). It was also tiring for me to sing and even to talk nonstop for more than a few minutes. I was also never able to run much for the same reason. My parents never took these complaints seriously...
  • deleted_user

    My two week old daughter...

    On April 13th, 2014, I gave birth to our absolutely beautiful 6lb daughter. She seemed to be perfectly healthy, with the exception of a slight heart murmur. The doctors reassured us that a lot of babies are born with heart murmurs and that it was most likely nothing to worry about. "I wouldn't send her home if I thought anything serious was wrong"--those were the exact words out of the...
  • RaeBax

    My son Callan...

    It took my husband and I a year and a half to conceive, this is our first. I was so happy. My pregnancy was really easy with no complications. On March 25th after less than 12 hours of labor I gave birth to our beautiful son Callan after a very short time of pushing. He was 7lbs 3oz.Everything seemed to be fine. The on-call hospital pediatrician was just a little concerned because he thought...
  • deleted_user

    Newly Diagnosed with HOCM

    Newly diagnosed - seeking to communicate with people with similar or same diagnosis to help understand, get advice, keep positive attitude, talk experiences. Just a thought, if your time permits.....Thanks
  • deleted_user

    Hole in her heart - ASD

    I just found out that my daughter has ASD. She is two and a half and was born with one kidney. We found out at 5 months pregnant that I had a two vessel cord. She was monitored intensely with sonograms. They never caught that she had one kidney until she was born. Now, after taking my son for an ecocardiogram to check him after birth (he's four months and fine) the doctor said he would peek at my...