The Bump recently posted an article "educating" readers about heart defects. After reading it, I was appalled at the lack of research done on their part. I proceeded to draft my own response and emailed it back to them. Sadly, the article does not allow for comments, or they would have gotten a quite lengthy one from me.
Here is my response to this article:
Here is my response to this article:
I am writing to say that the heart defect article you wrote is a disgrace to the heart community.( http://pregnant.thebump.com/new-mom-new-dad/baby-symptoms-conditions/articles/congenital-heart-defect.aspx?MsdVisit=1 )
As a heart mom who lost her child to heart defects, I feel I am more educated then your so called "expert". You run a very popular and well read website, I would think that you would take the time to research your topics and put a visible effort into your articles. But it is blatantly obvious that your writer took no time, other then interviewing that "pediatric hospitalist" to look into heart defects and the true statistics and details. And I want to know why a pediatric cardiologist wasn't interviewed? Did you even try to contact one?
The Bump is so widely read, I would think you would want to educate mothers the best way you can. Yet you pass off heart defects as nothing to worry about, they hardly happen, and when they do they're not that serious. Which isn't true!! You have the ability to reach thousands of mothers, new mothers, teen mothers but yet you do them a disservice by not fully educating them. These mothers could have read your article and read the multiple symptoms of heart defects and would know that when their child is nursing and breaks out into a sweat, that they need to call a doctor immediately. But you didn't! You have put baby's lives at risk with this article. You had the chance to make a difference and you failed. I strive everyday to educate pregnant woman and new mothers about heart defects and the test to detect them: pulse ox. I have made it my mission, after losing my son to heart defects, to help saves lives by spreading awareness. I would love to have the audience you do, but I don't. The fact that you do have such a large audience and have acted so lazy on such a important issue is heart breaking.
I am going to go through each of your points and add to them, along with adding links and personal experience to show how little you have even touched on in this article.
The first thing you read is: "most congenital heart defects are not serious". This is completely false. If you had done your research you would have found that almost half of heart defects are serious enough to require surgery. (http://www.congenitalheartdefects.com/stats.html)
Next you state that "most VSDs close on their own". This may be true but you failed to mention that the remaining require surgery to correct. My son's VSDs were huge and did not close on their own resulting in heart surgery. A VSD is a hole between the bottom chambers of the heart. No matter how big, that hole allows for blood to mix between the chambers. Oxygenated blood and blood that needs oxygen are switching back and forth between the chamber which can cause heavy breathing and a lower oxygen percentage in the blood. (http://www.congenitalheartdefects.com/typesofCHD.html#VSD
This can be detected by pulse ox, which I will go into more further on.
Next, the symptoms of heart defects. You only list two when in fact here are many more. (http://www.nhlbi.nih.gov/health/health-topics/topics/chd/signs.html)
-bluish tint to the hands, toes, or face
-heavy, labored breathing
-sweating on the forehead
-sweating during nursing
-nursing very often. The mother may think she is not feeding her baby enough because they are always hungry. This is because they baby can't breathe and eat at the same time and has to take breaks.
By leaving out these symptoms, you have endangered babies whose mothers have not be educated correctly by your website.
You also state that most heart defect symptoms show at birth. This is half true. Many heart defects show no sign and the baby is discharged to go home, only to die later without notice. Each of these links will take you to an article about a child who died from undetected heart defects.
Every mother should know the symptoms of a heart defect so the chances of catching a defect early enough are higher. You have failed to correctly educate your audience on the true dangers of heart defects.
As for heart murmurs, some heart defects show a murmur as a symptom yet you failed to emphasize the importance of this. My son presented with a heart murmur, but his heart defects were life threatening. He would have died within a week had his defects not been caught. AGAIN, you failed to share this important information. Heart murmurs should be taken seriously as you never know what they could be pointing to. And no, not every doctor can hear the difference in a murmur. My son's pediatrician scheduled an appointment with a pediatric cardiologist just to be safe, not because he thought it was a "dangerous" kind of murmur.
You next mention tests for heart defects. Yet again you fail to mention the most important one and the one that every mother should request after her child is born: pulse oximetry. An echo, and EKG, and an xray are only done after a heart defect has been suspected. A pulse ox test can tell you, without needing a sign, whether your child has a heart defect or not. It is a little band a nurse will wrap around the foot and hand that uses a sensor to beam light through the blood and measure the percentage of oxgyen. When done after 24 hours of life, your chances of catching a heart defect are tremendously higher then if you had only gone by physical signs alone. AGAIN, my son showed no signs of a heart defect besides his murmur. This test is NOT mandatory in every state, therefore mothers NEED to ask for it. IT SAVES LIVES; something you failed to mention. If you live in Indiana, New Jersey, or New York; it is done on every single infant after birth, but the rest of the country runs the risk of missing a serious defect due to the lack of laws mandating pulse ox testing.
This paragraph is something you should of at least shared with your audience. It is a cheap, painless, and LIFE SAVING test every mother should know about.
Next, your numbers are wrong. Again. Heart defects affect 1 in 100 babies. ONE HUNDRED. Then again you push that most of them are not serious. Which is not true. A new study suggests they are more common then that: http://www.telegraph.co.uk/health/healthnews/8953930/One-in-50-babies-has-a-birth-defect-research.html
Next, how babies get heart defects, you mention that some are "thought to be genetic". Most Congenital Heart defects are not genetic but there are genetic disorders that cause heart defects like Down Syndrome, Williams Syndrome, Di George Syndrome, among others. http://www.congenitalheartdefects.com/typesofCHD.html#williams.
You did mention folic acid, but not how important it is to take. http://www.ajcn.org/content/81/5/1213S.full This website also states that 1/3 of infant deaths are from heart defects. A statistic you should have shared along with the fact that heart defects kill more babies then all kinds of child cancers COMBINED. (http://www.marchofdimes.com/baby/birthdefects_congenitalheart.html)
I am really disappointed by your "examples" of what other moms do when their baby has a heart defect. AGAIN, you pass it off as something little that shouldn't be taken seriously. You failed to interview mothers whose baby died in their arms from an undetected heart defect (http://www.corasstory.org/) or a mother whose baby spends his whole life in the hospital, has three heart surgeries, then passes away (http://thecorbinstory.blogspot.com/). I know this is a scary subject, but people need to know the truth!! Heart defects affect one in 100 babies, many of which need surgery, and someaz of which will die. It is common and can happen to anybody. The more we educate mothers about heart defects, the better prepared they can be to detect those symptoms themselves. We can save lives and we need everyone's help to do it.
You did not even touch on the incredible amount of resources out there if you want to learn more about heart defects. The March of Dimes is a great resource, but you failed to mention the dozens of others.
Then this is my own article I wrote for the American Heart Association. I am a volunteer at their West Virginia office and am working closely with them to have pulse ox testing mandated in our state. Corbin' Law will hopefully be passed within then next few years!
As a heart mom, an angel mom, and a heart defect and pulse ox advocator, I would greatly appreciate a public apology for your lack of research and a newly written, well informed, and corrected version of this article to be posted. It is extremely disappointing for such a well respected website to take something so serious, so lightly.
Sincerely, Ruth Caruthers
Mom to Corbin Walker, born February 20th, 2011- died May 17, 2011.
The Corbin Story
What do you think? Would you add something?
Wow- I've read through your blog and I can't imagine going through what you have and coming through to the other side with such strength and resolve to make a difference. I don't think I could ever write about my two miscarriages and my pain so honestly and openly as you have. You are an amazing mom and person. Have you thought about teaming up with the march of dimes to do a march for babies in this area? Also there's an article in November 2011 Pediatrics medical journal about pulse ox screening for newborns you might find interesting. My thoughts and prayers are with you. Big hug:)
Post a Comment
Please leave some love. It makes me smile.