The hardest thing I’ve ever done

The hardest thing I’ve ever done is to hand my baby over to the surgeons so they could operate and save her life.

Did you know heart defects are among the most common birth defects–approximately 40,000 babies (1-2%) in the United States are born each year with a heart defect–and they are the leading cause of defect-related infant death?

And yet, there is comparatively little funding going into researching the causes of these heart defects and treatment options.

What amazes me most, is that some of the heart defects that do require surgery can be healed with just one operation.

Just one surgery and a child goes from a death sentence to a good chance to live a normal life.

Baby Diva’s cardiologist uses his own vacation time to identify good candidates throughout the world for these surgeries and then locates the funding to bring them to the United States for the operation.

The hardest thing I ever did was hand her over, but I did so knowing the operation has a 95% success rate and could give her a chance at a full life.

Without surgery, depending on the exact pathology, tetralogy of fallot has a mortality of 30% of patients by age 2 years to 50% by age 6 years, 80% by age 10 years, and 95% by age 20…and those statistics are for the more straightforward cases.

Thanks to dedicated and talented researchers and surgeons, I did not have to do something far more difficult–something no parent should have to do. Thanks to this operation, I did not have to hand my little baby over to be buried.

More research is needed, though. Some heart defects are caused by Fetal Alcohol Syndrome (FAS) or known genetic conditions, such as partial deletion of a chromosome. Others, like Baby Diva’s defect has no known cause.

Some cases, like Baby Diva, will need a follow up operation to replace a valve. Great strides are being made that may mean this follow up will be a less invasive procedure, rather than another open heart surgery. Some research even suggests we will be able to create a valve from the baby’s own cells, which will grow

Some fatal conditions do not have the same high operation success rates.

Some babies will never get an operation and will never reach their first birthday.

So, please donate to the American Heart Association in honor of Baby Diva so we can prevent, repair, and heal heart defects. Oh, and you can also win cool stuff by telling people about Congenital Heart Defects.

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  1. Christine says:

    Baby Diva is one blessed little one to have such a brave and loving Mama! My prayers are with you both!!

  2. Wow! you are an inspiration. I always feel I never do enough for awareness. I am grateful for the many people like yourself who put themselves out there and share. Thank you. I will probably write something about Abby within the next few weeks. One of my businesses said I could write an article about chds. So I am really excited! I also want to write articles about asthma and diabetes. Thanks again for sharing!