Mend a Broken Heart

You think that I am probably thinking about getting over a break-up don’t you?  No, I am talking about your actual heart.  February is American Heart Month.  Most of us think of heart disease as something that affects adults as they grow older, and that there is plenty out there on how to prevent heart disease, like eating healthy  foods and exercise. But children have heart problems, with the most common being a congenital heart defect - something they are born with.

February 7  thru February 14 is Congenital Heart Defect Awareness Week.   Each year almost 40,000 babies are born with a heart defect.  CHD affects approximately 1.8 millions families in the U.S. and this subject is very special to my heart since each week I take care of a child with a heart defect.

The CDC webpage has some great information, as does Congenital Heart Information Network and this video.   It uses a lot of fancy words but in simple English these children’s hearts did not develop correctly:

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Take a journey with two different families as they deal with this diagnosis:

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This has more video right after the surgery, so if you are sensitive to that you might want to skip it. (Yes, she is wearing fancy bows.  Parents have so little that they can do until their child goes to the step-down unit that they focus on bows and socks.)

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Do you have a child born with a congenital heart defect or do you know a family that is dealing with this?  If not, then I hope I have provided you with new information about the number one birth defect in the United States.

- Leigh

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9 Responses to “Mend a Broken Heart”

  1. LeeB. says:

    Thanks for sharing this with us Leigh.

  2. maggie b. says:

    The older I’ve gotten the more I realize what a gift good health is. I knew a family that had three children with congenital heart defects. Mom refused to give up hope that she would have a healthy child. The first three died but the fourth is healthy and happy. This was not a decision I personally could have made. My own heart “defect” is that it is not strong enough to deal with that kind of heartbreak.

  3. Leigh says:

    There is a genetic link to heart defect so it is important that families get genetic counseling. Here is some information of the CDC page:

    The cause of most congenital heart defects is unknown. Some babies have heart defects because of changes in their genes or chromosomes. They also might be caused by a mix of genes and other risk factors. The Centers for Disease Control and Prevention’s National Birth Defects Prevention Study has found that women who are obese, have diabetes, or smoke during pregnancy increase their chances of having a baby born with a heart defect. A woman can take some important steps before and during pregnancy to help prevent congenital heart defects. She can work to get to and stay at a healthy weight, control diagnosed diabetes, quit smoking, and take folic acid daily. These actions can reduce the risk of having a baby with a congenital heart defect.

    Don’t get me wrong. You can do all the right things, and it happens.

  4. Victoria S says:

    My youngest sister was born with a congenital heart defect, as well as some other developmental issues. When she was born, the doctors told my mother she would probably only live 6 months. When she made it past 6 months they told her five years, at 10 they finally stopped guessing and admitted they had no idea. She had several surgeries, that I am sure prolonged her lifespan and helped improve her quality of life. She went to school in Special Ed classes until she was 21; at her graduation we cheered like she was named Summa Cum Laude :-). Shortly after that she went to work at a workshop for mentally and physically challenged adults where she worked for 22 years, until health issues began to take their toll. She went to our state capital each year to participate in Special Olympics Bocce, and was part of the regional Special Olympics Bowling team (they never made state). While her illnesses were hard on my mother emotionally, we never once regretted her being part of our family (she was the youngest child of 6). I am grateful we live in a country with great medical facilities and programs that allow our physically and mentally challenged to actively participate in society, and live rich and full lives as far as they are possible.

  5. Leigh says:

    Victoria S

    What a wonderful story. Thanks so much for sharing.

  6. Susan/DC says:

    My son Noah was born with Tetralogy of Fallot, a congenital heart defect. The tetralogy means there were four things wrong with his heart, and Fallot was the doctor who first identified the syndrome. It’s quite serious; the only heart defect I know of that is more serious is Transposition of the Great Arteries. (You’d think that with TGA all the doctors would have to do is reverse the main arteries, but it turns out that the veins and arteries within the heart itself are also reversed, so it’s actually very difficult.) With Tetralogy, it’s more just a matter of the plumbing and is easier to fix.

    I’m not obese, don’t smoke or do drugs, don’t have diabetes, and as far as we know neither my husband nor I have a family history of such problems, but sometimes these things just happen. Noah had his first surgery at 5 days old, another at 14 months old. His heart was repaired (mostly) when he was 3 years old. He’s now 26, and his prognosis is excellent for a long and healthy life. Nowadays they don’t wait as long as they did with Noah to do the repair but do it on infants, a sign of how far medicine and technology have come in the past 25 years. It always makes me a bit sad, however, when I think of the fact that Noah’s first word was “doctor” and that he kicked the habit of sucking his thumb after the surgery when he was 3 because his arms were bound to the side of the bed (they do that with young children so they don’t pull at the tubes and wires) and he couldn’t reach his hand into his mouth. My heart goes out to Grant and Elise’s parents, and I thank the doctors and nurses at Children’s National Medical Center in Washington every day.

  7. Leigh AAR says:

    Susan/DC

    Thanks for sharing. I am glad that your son is doing well.

    And yes we still use restraints, but honestly things move fast with most patients getting their breathing tubes out within two to three days. And once that happens usually they can get their hands free and pop the thumb or finger back into their month

    .

  8. Leigh says:

    Ah, hello – mouth not month.

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