Dear: The Bump

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:

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.

-extreme jaundice

-heart murmur

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. 

http://www.corasstory.org/

http://www.whig.com/story/16331241/baby-dies-of-natural-causes-during-quincy-shopping-trip

http://www.cfnews13.com/article/news/2011/december/354855/University-High-School-lacrosse-player-died-from-undetected-heart-condition

http://www.cfnews13.com/article/news/2011/december/354855/Medical-Examiner:-University-HS-lacrosse-player-who-died-had-heart-condition

http://www.abc.net.au/news/2011-12-06/parents-say-boy-left-hospital-too-early/3714680

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.

(http://www.indystar.com/article/20111122/OPINION01/111220309/Save-more-babies-new-newborn-screening?odyssey=mod%7Cnewswell%7Ctext%7COpinion%7Cs)

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.

http://1in100.org/

http://www.childrensheartfoundation.org/

http://www.ncbi.nlm.nih.gov/pubmed/21820732

http://www.nj.com/times-opinion/index.ssf/2011/12/opinion_nj_requirement_for_pul.html

http://articles.philly.com/2011-12-07/news/30486333_1_heart-defect-oxygen-level-newborns#comments

http://www.mayoclinic.com/health/congenital-heart-defects/DS01117/DSECTION=symptoms

http://www.cdc.gov/ncbddd/pediatricgenetics/documents/CCHD_one_pager.pdf

http://www.nann.org/advocacy/agenda/universal-newborn-screening-for-congenital-heart-disease.html

http://childrenshospitalblog.org/wp-content/uploads/2011/02/FourQuestionsToAskYourDoctorDuringAnUltrasound.pdf

http://pulseoxadvocacy.com/

http://operationhealinghearts.org/

http://www.chphc.org/hostedsites/Pages/default.aspx

http://www.congenitalheartdefects.com/

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! 

http://wvgazette.com/Opinion/OpEdCommentaries/201112110025

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

http://thecorbinstory.blogspot.com

What do you think? Would you add something? 

Snow

I came to visit you today. I put a little green wreath above your headstone and a green ribbon. I'm not used to this; decorating your headstone. I want you to be included though, and not forgotten.
As I was kneeling down, I noticed the headstone behind yours. It's new. Too new. Another mother has lost a child. His headstone was decorated so nicely, I felt like I hadn't done enough.

My biggest fear, as I looked down on your name, was that you were cold.

It's terrifying to think that way. The first time it rained, I had an incredible urge to go to your grave and hold an umbrella over your headstone so you wouldn't get wet. It breaks my heart to think of you that way. I know you aren't there, but just the thought of your body....

Oh God.

Six months

Six months ago today my son died.

Six months ago today, my world was rocked into a different universe.

Six months ago today, my family went from four to three.

Corbin Walker was born after a full term, "normal" pregnancy. There were no signs of any problems during pregnancy nor after birth.
I seemed to be the only one, besides my mother, worried about his heavy breathing. "My first born never did it; it's not normal" I told the doctors. But they said it was nothing to worry about, "it's a newborn thing."
I was also stunned by his low birth weight. After having a 9 pound, 4 ounce firstborn, a tiny little 6 pound, 14 ounce baby looked like a doll. A tiny, red, wrinkled doll. Not to mention his incredibly awful jaundice. They said it was "normal" and he should clear up after a few days of nursing.
Little did I know, these were three crucial signs of the very serious problems he had.

Thankfully, Corbin did present one sign the doctors could not ignore. His heart murmur.

We were sent for an echocardiogram (an ultrasound of the heart) a couple days later. There wasn't a cardiologist present, but only a technician. She told she could see holes in his heart. We weren't given any other details, we were not told how they would be fixed or what we should do about it. We were told to wait another two days before we could talk to a cardiologist.

Not an easy night for two parents.

That Friday we finally met with a cardiologist and he was able to get a full look at Corbin's heart.
"You need to go to the ER immediately. He should have died when the umbilical cord was cut."
The next couple hours were only the beginning of a very long and hard journey.

Corbin was taken into the ER and put on prostaglandin to keep his aorta open. He was officially diagnosed with an interrupted aortic arch, along with the holes in his heart called Atrial Septal Defects (ASDs): holes between the upper chambers of the heart, and Ventricular Septal Defects (VSDs): holes between the lower chambers of the heart.

     



Notice the red blood mixes with the blue blood which is basically blood that needs oxygen is mixing with blood that already has oxygen.

Simply put: the plumbing is all wrong.




The large red artery at the top of the heart is the aortic arch.

Corbin's aorta was nearly blocked off. His blockage was downstream of the three veins at the top of the image.

We were told it could completely close at any second.




Once he was put on medication, the hospital called the Children's Hospital four hours away to ask for an ambulance. Once they arrived, they loaded Corbin up and took him back to the Children's Hospital to await surgery.

I will make a very long story short by saying Corbin spent the next 81 days in the hospital. He underwent three heart surgeries, one heart catherization, and countless xrays, EKGs, blood tests, and echos. His diagnoses expanded into multiple other heart defects, heart rhythm issues, and one genetic disorder called Williams Syndrome. This disorder was the cause of all his heart problems.
The doctors began to think he had WS after his first heart surgery when they could actually look at his heart and they saw his veins were thicker then normal. One test, and two weeks later, it was confirmed.

Three days before Corbin would turn three months old; his heart stopped.

It was two days after his third heart surgery. He was having a hard time recovering and the surgery was too much on him. The doctors had given me "the talk" earlier, they wanted to make sure I understood that he may not make it. I refused to accept their worries. I was confident and hopeful.
But in my heart, I knew he wouldn't make it.
That sounds awful but it's true. I knew. I knew we would never bring him home. I knew we wouldn't use the new bassinet we had just picked up. I knew we wouldn't need all the baby boy clothes from the Ronald McDonald house.
I knew.

But his death is not in vain.

After he died, I decided to do something about it. I buried my child, but I wanted to prevent other mothers from going through what my family did.
A woman named Kristine wrote a powerful story called Cora's Story, in it she talked about a test called Pulse Oximetry. From her blog I learned about the cheap, painless, and live saving test called Pulse Ox. It helps detect heart defects by measuring the percentage of oxygen in the blood. Most heart defects mess with the oxygen saturation within the blood so it is quite effective.
Something you also need to know: heart defects are the number one defect in newborns. It affects one in one hundred babies.
Not one in ten thousand; ONE in 100.
Kristine had worked so hard that she had gotten a bill passed in her state of Indiana making it mandatory for every newborn to be tested for heart defects with Pulse Ox.
I was inspired.
I could do that.

Since then, I have teamed with two other heart moms and we have made it our mission to spread pulse ox and heart defect awareness. We hope to have a bill passed within the next 5 years. We have gotten the full support of the American Heart Association and are working closely with them to get this bill passed.

But we can't do it alone. We need your help. We need you, the public, to show these politicians that we are not the only ones who care about newborns, heart defects, and pulse ox. We are asking everyone to sign up at You're The Cure to stay update on our progress, and when the time comes, to send emails to our legislators showing your support!
Together, we can do this.
Together, we can save lives.



Ruth blogs at: http://thecorbinstory.blogspot.com
and at: http://life-afterloss.blogspot.com

You can reach her at: thecorbinstory@aol.com
or at: corbinsheart via Twitter.

Thank you for reading and please, help us save the lives of newborns!

This post is part of a blog fest

That will be you

I haven't been posting as much as I should. It helps me through this hard journey, but lately, I have been avoiding it. But today I came across a link to Faces of Loss sharing a story of a mother's loss and I understood. I related to what she was saying and I feel like I should share my story here.

It was before Corbin's last heart surgery. I was sitting in the living room of the Ronald McDonald house. I remember one of the staff came up to me and explained one of the couples had just lost their son. The couple was standing in the kitchen, saying their goodbyes to friends and the staff. I looked at them with pity, but no understanding. I remember the look of pain on the mother's face. The tears running down her face. Her son was five months old and had spent his entire life in the hospital. He had never once been home and his mother had never gotten to hold him.
That day she did.
The first time she got to hold her son, he was dead.

I remember looking at them, feeling pity and sorrow in my heart, hoping that would never be me.
"That will be you" I heard.
It was the voice of God telling me that I would soon be that mother. I would soon lose my son.

I ignored the voice. I brushed it aside, saying "No, he will make it".

But I knew. Deep down inside that I would be that mother. I knew that Corbin was never going to come home. God was preparing me for what was to come. I truly believe that.
It didn't make the pain any less, or the journey any easier. But it took the shock away.

In a way, I'm thankful for the feeling I had. That doesn't mean it hurts any less. That doesn't mean I don't miss my son every single second of the day. I would love to go back to the day we brought him home and live in that moment forever.
February 23rd. The best day we had together.

I don't know why I heard that voice. I don't know why I was given the feeling that he would never come home. But it helped me prepare, and for that I'm thankful.

Never forget

One of the harder parts of losing a child is incredibly speed at which time flies after they are gone. I feel like the world is on fast forward, and one day soon, no one is going to remember you.

But not today. Today is all about remembering and sharing and being there for each other. It is a day of love and memories. Today, time stands still.

Today I released ten red balloons in honor of a few babies that have left us too soon. I know 10 barely touches on the amount of children that leave us every day, but it felt good to say their names. They are not, and will not, be forgotten.

This balloon is in honor of my brother Elijah. He was a miscarriage years and years ago, when I was about 8. It was the first time I had ever seen my parents cry.

Here are the balloons, flying over our farm, on their way to heaven.

As part of my dedication today, I went by myself to my son's grave site. I tied his balloon to his wind chime stand, took a few pictures, and when I turned around to get my video camera ready: whooosh. There went his balloon! I couldn't help but laugh. Corbin was not waiting around for me to get my camera ready; he wanted to play with his balloon! I managed to get a few pictures before his balloon completely disappeared. I was a little disappointed that I wasn't able to do video the dedication I had in mind, but I felt like Peanut was there.

Miss you baby.

Make me a rainbow...

This evening, as I was headed to the grocery store in the pouring rain, "If I Die Young" by The Band Perry started playing. As the lyric: "Make me a rainbow, I'll shine down on my mother" starting playing, I sent up a prayer wishing to see a rainbow from Corbin. 
It wasn't 5 seconds later, when I looked to my left, there was a double rainbow!! I slammed on my brakes, pulled off the road, and scrambled to take a picture before it disappeared. 
As soon as the song was over, the rainbows vanished. I just cried and cried, thanking God for my short, but so meaningful moment with Corbin. It was so obvious that moment was meant for me and that is was sent from Peanut.
<3 <3 <3

We love and miss you Peanut. Thank you for saying hi. <3 <3 <3