Wednesday, February 13, 2008

7 For 7: FAQ From the AHA

7 Frequently Asked Questions
Taken from a fact sheet provided by
American Heart Association
with my personal comments and reactions

The American Heart Association (AHA) has a love/hate relationship going on with the CHD community. They do provide some research funding for CHD (they're actually the #2 funder in the US according to one of my sources). However, their main focus lies on adult heart health, with campaigns for women's heart health, stroke awareness and childhood obesity taking center stage on their advocacy front. They neglect to even address our children unless we kick and scream to be heard.

Some of the CHD community have given up on them entirely. I have not, because the research they do on a valve in an adult may be applied to a pediatric patient someday. They have the potential and the funds to reach many more people than any of the plethora of CHD support/advocacy groups out there. The next highest contributions to research are from the Children's Heart Foundation, which raised 2.3 million in 2-3 years. In case you're not involved in the research community at all, it's a mere spit in the bucket.

So, I think we have to find ways to work with them. They do have some information worth sharing. They simply need to be educated, just like our obstetricians who keep missing all the warning signs, our technicians who pass over patients in one or two ultrasounds but never really see the heart, and our friends, family and loved ones. That being said, I do have some comments to their "FACT" sheet they posted online. So, I thought I'd share them with you and complete my second-to-last 7 For 7 post for the year (hooray).
  1. What is a congenital heart defect?
    Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

    Sadie had one of the more severe defects. The majority of children who have heart defects have narrowing of the arteries or small holes in the heart, which are easily corrected, outgrown or not overly dangerous. It is believed that most defects occur between 6-10 weeks of gestation. This does nothing, however, to assuage a mom's guilt. I'll forever feel like I did something wrong that made Sadie's heart form unnaturally. Was it the fertilizer I used? Was I failing to get the supplementation she needed (folic acid and iron are both suspect in heart defects)? Is there something wrong with me that I passed to her? They're all silly, but all things that I think most mom's think, so that's why I share these ├╝ber private thoughts.

  2. Who is at risk to have a child with a congenital heart defect?
    Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

    The number is actually (according to the CDC website and based on average births in 2005) 1 in 103 are born with birth defects in the US. It's believed that that rate could actually be higher on an international scale.

    One interesting conversation I had in the last week or so was with two other heart moms, during a play date. Somehow the conversation came up that we had all had miscarriages. Does this play into it? We began to wonder how many other CHD moms had also lost children before going full term. I haven't found any research out there that provides any answers.

  3. How many people in the United States have a congenital heart defect?
    Estimates suggest that about 1,000,000 Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.

    Ah, the AHA. Wrong numbers again. The CDC says 40,000 are born. It's been interesting these last few weeks as I've come across adult survivors of CHD in my adventures in advocacy. It turns out that adults often end up relying on pediatric cardiologists, because there simply is NOT enough research out there to support care for CHD patients as they mature. It's a whole other CHD battle that I'd never even considered... what sort of care will be provided for Sadie when she grows up?

  4. Why do congenital heart defects occur?
    Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.

    No, I didn't drink while pregnant (well, a half glass of wine twice in the 9th month, weeks apart, if that counts); No, I didn't smokem da peace pipe. Didn't sniff glue. Didn't snort or intake anything. I ate healthier than I normally do (I think all moms do), took all my prenates, followed the doctors orders. But Sadie still came out with her heart plumbed backwards. I may never know why. I hate some of the looks I get sometimes when I talk about her defects. I can see some people judging. Maybe some of the analysis of those looks are in my head, but I don't think it all is. I've even had a few brazen individuals ask what caused it. I DON'T KNOW.

  5. How can I tell if my baby or child has a congenital heart defect?
    Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

    They seem to miss the story I've heard time and again this week on one of the listserv's I'm on... diagnosis at birth. Many people have "warning signs" during ultrasounds and prenatal visits. Unfortunately, I am not the only mom who was unpleasantly surprised at birth.

    One friend I made since Sadie's birth had a daughter with HRHS, or only half of a heart. She was not diagnosed until birth. Her daughter passed away last year, and it was incredibly sad. Part of my sadness stems from the fact that, to this day, I know in my heart that her life could have been saved by that pre-birth diagnosis. This is part of the reason I'm out on the renegade CHD blog-a-thon this month.

  6. How serious is the problem?
    Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to congenital heart disease. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.

    This is the part that annoys me with the AHA. They admit it's the #1 cause of death due to defects in infants (1 in 43 children are born with defects of some sort). They admit that it's a killer. They admit that the cost of care is astronomical. But they ignore our children. Hopefully they will hear the CHD parents and adults of this world and change their minds... our children, our friends and our loved ones deserve the attention and advocacy we so desperately need.

  7. Are things improving?
    Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30% and today it is around 5%.

    Sadie is one of those statistics. Her heart surgery was first put into use 25 years ago. Her heart is "fixed" most likely. I can not wait until the day that I read of fixes for HLHS, TA, and all the other life-threatening CHDs out there. It's just around the corner if we can get enough funding and awareness going!

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