Annual cardiology appointment

Yesterday we had Jake’s annual cardiology appointment. It’s turned into a tradition to go on President’s Day since we all have the day off. I generally am in charge of doctor appointments but I don’t like to go to the cardiologist alone.

As usual, Dr. Hougen impresses the heck out of me. He is truly a wonderful doctor. He is unpretentious and has a wonderful bedside manner. He and Jake talk baseball every year and make predictions about the upcoming season.

Since Jake was 2, we’ve gotten the “see you in a year” speech. This year, things were different.

The EEG and the echocardiogram were “normal” for Jake. As with most Tetralogy of Fallot patients, he has leakage in his pulmonary valve. We’ve always been told that its possible he will have to have it replaced someday–and someday may be coming in the next several years. While there was nothing alarming in the echo, Dr. Hougen explained that he needs a cardiac MRI to really get the best look at the valve and the right ventricle. He said that they have really figured out that its really important to be pay attention to that right ventricle.

So, there’s nothing to be concerned about and certainly nothing is imminent. But it’s a reminder that even though Jake lives a normal healthy life, he has some big issues that he will always have to deal with.

It’s important to note that although Jake’s valve is leaky and there is a possibility of future surgeries, it doesn’t mean that his repair surgery wasn’t good. Quite the contrary actually. Dr. Hougen remarks every year that his repair was excellent.

I will say that I am very grateful that there is a generation of adults ahead of Jake who are living with Tetralogy of Fallot. They are paving the way for kids like Jake to live long, healthy lives.

I’ll update after the MRI.

Happy Heart Birthday

This was taken the morning of Jake’s surgery – June 5, 2000. You can see how blue his feet were.

This post was originally published in 2012. I’ve updated it with some new details.

Sixteen years ago today, Jake had his last heart surgery.  He was 8 months old, 11 pounds and very, very ill.  This would be his fourth surgery in his short life and the third that was literally life-saving.  He was too small for the surgery, but he was also too sick to wait.  So, we did what we had to do.  I remember with vivid clarity handing him over to the nurse at Phoenix Children’s Hospital and watching them walk into the operating room.  In the weeks and months that followed that surgery, the doctors admitted that they had little hope that he would survive.  I heard more than one call him a miracle.  His pediatrician looked me in the eye and said, “he should not be alive”.  You can read more of his story here.

If you’ve been reading my blog for long, or if you’ve known me for more than a year, you know that I say the same thing every June 5th (except for the year I forgot!).  I sound like a broken record.  I’m grateful — so grateful.  But mostly, I’m humbled that I get to be his mom.  He makes me want to be a better person.

One of the things that has always amazed me is that he just isn’t afraid of anything.  He isn’t afraid to take risks.  And, when he decides he wants to do something, he gives it his all.  And most of the time, he does it with an infectious smile on his fact.  He’s not a big kid, but he’s got big personality.  And, people are drawn to it.  These days, as he faces the weird social vibe of high school, I’ve been impressed with how comfortable he is with himself.  He’s just not afraid to be who he is, and in turn, he accepts people for who they are.  I’ve often wondered if this comes from a deep, albeit somewhat sub-conscious, realization that life is short.  I love watching him grow up and I am so excited to see what he does with his life.

Unfortunately, 1 in 100 children are born with a congenital heart defect.  The silver lining in that statistic is that my son has some role models to look up to.  I’ll never forget when he realized that Shaun White has the exact same heart defect that he has, Tetralogy of Fallot.  And, here he is…an Olympic gold medalist.  Max Page also has Tetralogy of Fallot.  Name doesn’t ring a bell?  You know him as Darth Vadar in the brilliant Volkswagen ad that first ran during the 2010 Superbowl.  Paul Cardall is a pianist with an amazing story of survival.  Tedy Bruschi was a linebacker for the New England Patriots who suffered stroke, a result of his CHD.  He was named NFL Comeback Player of the Year in 2005 after his return.  These people are proof that an illness does not have to define your life.  And most recently, Jimmy Kimmel’s newborn baby was born with Tetralogy of Fallot, proving once again that heart disease can affect anyone. And, it doesn’t have to be a heart defect — we all have something that we face.  These stories can inspire us all.

In June 2012, Buddy Media signed a deal to sell to  I saw the tweets and the headlines in my news feed.  I’ll be honest and say that I didn’t care enough to read the story.  And then a friend sent me this you tube video that Michael Lazerow posted after the signing of the deal .  As my husband and I watched it that night, I realized that this is what I want for Jake.  I want him to never doubt himself.  To know that he can do anything.  And, to never be afraid.

Death by Caffeine

A couple of weeks ago, I was taking some kids in our carpool home and they were talking about how their moms make them eat breakfast every day (seriously, kids today are so abused). One girl said that she will usually just have an energy drink or two and I caught my 12-year old looking at me in the rear view mirror in horror. You see, I have pretty much forbidden caffeine consumption by my son. He has a Tetralogy of Fallot — a congenital heart defect — and while it has been “repaired” and doesn’t really have any physical restrictions, his heart still works differently than a normal heart. You can read more about Tetralogy of Fallot here, but the bottom line is that he still has a leaky pulmonary valve, which causes his heart’s right pumping chamber to have to pump a little harder than it otherwise would to pump more blood – both the backward-flowing leaked blood and the incoming blood from the heart’s right upper chamber. Imagine if you only worked out your right bicep muscle — it would become significantly larger than the left. That’s the same thing that can happen to the heart. Over time, the extra work can cause the pumping chamber to enlarge significantly and could lead to heart failure. It’s something we monitor annually, so the likelihood of it happening to Jake is slim, but there may come a day when that pulmonary valve has to be replaced. What does that have to do with caffeine? Caffeine elevates your heart rate and blood pressure, which also cause the heart to have to work harder than it normally does. I see no reason to make Jake’s heart work even harder, so that’s why I have been pretty adamant about the issue.

Enter energy drinks. And middle school. Energy drinks are marketed toward young people. Young people are easily swayed by marketing. And, peer pressure. Middle schoolers like to tease other middle schoolers, saying things like “oh, your Mommy doesn’t want you to drink caffeine” and other nonsense. Twelve year olds don’t generally worry about their mortality because they are 12. They also start to worry more about what their friends think than what their parents say. Do you see where I’m going with this?

Last December, Anais Delilah Fournie, a 14 year old girl in Maryland died after drinking 2 energy drinks. My understanding is that she didn’t drink them back to back — it was within a 24 hour period of time. Even so, those two drinks caused caffeine toxicity which basically overloaded her heart and it began to beat irregularly (cardiac arrhythmia). And, she died. Of a heart attack. At age 14. Here’s a clip from Anderson Cooper:

Let’s talk about Caffeine toxicity. Toxicity refers to a degree of being toxic. Toxic = poison. As parents of young children, I imagine most of us taught our kids about Mr. Yuk — and locked away anything that might be remotely poisonous so that our kids would not get into them. Many of us may have even called that number on the Mr. Yuk sticker. I know I did at least once. We diligently follow the recommended dosing chart that our pediatricians give us to determine how much Tylenol we can safely give our kids based on their weight.

So, why on earth — now that they are older are we letting them put poison into their bodies? Is it that we aren’t educated about the dangers of large amounts of caffeine? Do we not know the caffeine content in these drinks? Do we not know what “safe” levels of caffeine consumption are? Are we convinced that they are safe because they are available to buy? Or are we unaware that our kids are drinking them?

As a parent, I call BS on “not knowing”. The facts are available to anyone who looks for them. Granted, we have learned some of this the hard way. When these drinks first began to come on the market, we did not have the knowledge that we do now. But, we do now. And, this is the United States of America and we have a 24 hour news cycle and internet access and smartphones and we just don’t have an excuse not to know. And, if you still don’t know, here are some facts:

  • A recent report by the Substance Abuse and Mental Health Services Administration (SAMHSA) shows that energy drinks pose potentially serious health risks. The report found that between 2005 – 2009, the number of emergency room (ER) visits due to energy drinks increased ten-fold from 1,128 to 13,114 visits.
  • 30 to 50 percent of adolescents report consuming energy drinks (in other words, that glossy advertising targeting young people works).
  • According to the American Academy of Pediatrics, adolescents should not consume more than 100mg of caffeine daily. One 16oz can of Monster contains 160mg of caffeine, which is equivalent to almost 5 cans of soda. However, this caffeine level does not account for caffeine from additives, like guarana, or ingredients with stimulating properties, like taurine and ginseng, which most energy drinks also contain. In other words, it’s impossible to know just how much caffeine is in those drinks. The labels reflect the MINIMUM amount of caffeine.
  • Consuming large quantities of caffeine can have serious health consequences, including caffeine toxicity, stroke, anxiety, arrhythmia, and in some cases death. Young people are especially susceptible to suffering adverse effects because energy drinks market to youth, their bodies are not accustomed to caffeine, and energy drinks contain high levels of caffeine and stimulating additives that may interact when used in combination.
  • The FDA has the authority to regulate caffeine levels in soft drinks to .02 percent or less of the product – about 71mg in a 12oz soda. The agency also has the authority to regulate additives in beverages to ensure they are safe for their intended use and when used in combination with other ingredients.
  • Most energy drinks are currently marketed as dietary supplements, therefore they do not need to establish evidence of their products’ safety or adhere to a limit on the level of caffeine. At the same time, many energy drinks come in single-use containers ranging from 8oz to 32oz and are marketed like beverages. Rockstar Energy Drink’s website says, “enjoy this fully refreshing lightly carbonated beverage.”

Responsibility #1 is on the part of parents. We need to educate ourselves. And, then we need to educate our kids. If we teach our kids to wear a seat belt and that smoking is bad for them and that they shouldn’t drink and drive, then we need to take this just as seriously (and while we’re at it, we need to tell them not to text and drive, but that’s another post entirely).

Then, we need to put pressure on the FDA to regulate these products. As stated in the Anderson Cooper clip, moms have power. Write a letter to the FDA, contact your representative — let them know that you are aware and you want regulation on these drinks. Don’t know the address? Here ya go:

The Honorable Margaret Hamburg
U.S. Food and Drug Administration
10903 Hampshire Avenue
Silver Spring, MD 20093

Don’t know who your representative is? You can find out here: Who is my Representative? There is also contact information for each of them once you’ve put your information into the search fields.

Don’t know what to say? Read this letter from Dick Durbin (D-IL). It’s full of good information and lays out exactly what lawmakers are asking of the FDA (and incidentally, most of the facts I listed above were taken from this press release).

And, if you’re reading this and still thinking, what is the big deal? Put yourself in Wendy’s shoes. She lost her daughter in a tragic turn of events that could have been prevented. You don’t want to ever be there. I promise. And, if you’ve read this post, you can’t claim you didn’t know.

Not my typical Valentine’s Day post

I’m sitting here in front of my computer with about ten things on my mind to write about.  I have to make a choice between posting a random mish mash of these thoughts or focusing on one topic and coming back to the others another time.  The problem is that whenever I do that, I don’t come back to the other stuff.  To spare you from reading a novel, though, I’ll stick to one topic…but to hold myself accountable to the other things, here’ s an abbreviated list of some of the things on my mind today:

  1. Whitney Houston
  2. Facebook observations
  3. Religious Freedom
  4. Changes

They are all timely, but I’ve decided to focus on Valentine’s Day.

If you’ve known me longer than 365 days, you know that I am not a fan of Valentine’s Day.  It’s one of those “holidays” that people either love or hate or love to hate.  Recently, the Oatmeal posted this comic (warning:  colorful language) and I promised not to rant about Valentine’s Day this year.  If you’re curious about my position, you can read my Valentine’s Day – Bah Humbug post here.  And, then this morning, I asked my 12 year old if he would be my Valentine and he said “I don’t celebrate” and went on to parrot all of the things I have said about Valentine’s Day over the years. My first thought was “Oh no…I’ve ruined him”.  My second thought was “Oh no….my future daughter in law is going to hate me”.  Now, she might hate me anyway, but I decided it won’t be about this issue.  I very seriously told him that unless he is lucky enough to find a partner who lets him off the hook at Valentine’s Day, he needs to suck it up.  Sometimes we do things just to make other people happy.

Truth be told, Valentine’s Day is important to me too.  But, for a different reason.  It marks the culmination of Congenital Heart Defect Awareness Week.  CHD Awareness Week is an annual campaign designed to help educate the public about Congenital Heart Defects. The movement was founded in Feb 2000, just a few months after my own son was born with a Congential Heart Defect.  I have had the priviledge of watching the movement grow into an  international coalition of families, individuals, non-profit organizations, support groups, and health professionals who are dedicated to increasing public awareness of Congenital Heart Defects and Childhood Heart Disease.

The fact is that congenital heart defects are common.  In fact, it’s considered by the CDC to be the most common birth defect, affecting nearly 40,000 births in the US every year.  Worldwide, it is a leading cause of birth-defect related deaths.  Despite all this, a relatively small amount of funding is currently available for parent/patient educational services, research, and support. Even more disturbing is that most states do not require newborn screening for some of the most critical heart defects.  The thing is that many times, heart defects will not show signs or symptoms right away.  Without newborn screening and parent education, babies are at a much greater risk of death or disability from their condition than children who are diagnosed within the first 24-48 hours of birth. My own son’s story is a perfect example of how early detection and palliative treatment can save lives.  If he had not been pre-mature, he very likely could have been sent home and we would have had no idea that he had a life threatening condition.

Pulse Oximetry Screening is a simple, non-invasive way to test a the oxygen levels in a baby’s blood.  While this screening does not replace a complete physical examiniation and it does not detect all heart defects, it can alert doctors to a potential problem and the baby can get the additional testing he or she needs.

I am proud to live in a State that has already passed legislation for newborn screening for congenital heart defects.  But, if you don’t live in Maryland, New Jersey or Indiana, it’s possible that babies in your state are not getting this simple test.  If you are pregnant or know somebody who is or might become pregnant, you should care about this.  Since we all probably fall into one of those three categories, we all should care about this.

If you want more information on congenital heart defects or CHD Awareness Week, visit the Congenital Heart Information Network.  These folks have been working hard for years to raise awareness and their website is full of information on CHDs and ways that you can get involved.

CHDs are not something that happen to other people’s kids or people you don’t know.  If you are reading this post you know somebody with a CHD.

And that’s why Valentine’s Day is important to me.  Well, that and less complaining, more sexy rumpus….

Jake has Tetralogy of Fallot.  This picture was taken when he was 3 and full of energy.  It wasn’t always that way, though.  You can read his story by clicking on the picture.

Happy Heart Birthday

It has been 11 years since I handed my baby boy over to the nurse in the hospital. It was a hot summer morning in Phoenix and the hallway was bright. I remember he watched me as the nurse took him into the operating room and all I could do was ask Jesus to be with him and comfort him.

It was the first time I had seen my husband cry.

I remember friends and family waiting with us. I remember how tense it was whenever we would get a call with an update. I remember with vivid clarity the nurse who came out to tell us that the surgery was over and they were sewing him up. She was petite with short brown hair and very compassionate eyes.  But, the thing I remember most is an absolute confidence that my baby was going to be okay. I knew it. 

It was touch and go for a few days — and there was a day that I got down on my knees and begged God not to make me bury an infant.  But within a week, he was out of the hospital and we were ready to move on with our life.

Jake’s short life has not been easy, from a medical standpoint.  He’s got more “ologists” than most people I know, young or old.  But, today, the scar is pretty faded and if you didn’t know about his rough start, you probably wouldn’t guess it.  Peronally, I think he is an extra-ordinary child – but I realize I’m a bit biased.  He smiles with his whole body and his enthusiasm is contagious.  He’s vibrant and full of energy.  He’s talented and smart.  He’s compassionate and justice driven.  And, he is funny.  He’s really funny.

It’s not lost on me how blessed we are.  I am thankful for every day that God has given us with Jake.  But, today, I am just thankful that we can have an ordinary day.

Jake – June 5, 2000 just hours before his open heart surgery.


It’s a little ironic that our family hails from Scotland – direct descendents of William Wallace.  My own son shares the name that has passed down for years in the Wallace family.  Despite the historical innacruacies, the movie rightly portrays William Wallace as a patriot, a hero and a brave warrior who fought for his country’s feedom.  He was inspirational as he led his men to battle, ill-eqipped as they were.  And, in the end, he never gave up hope – never stopped fighting.

I like to think that my son inherited more than his name, but also some of the characteristics that have left such an impact on history.  True, the stubborn streak is one that gives a mother fits….but without it, he may not be alive today.  He was born fighting – I was sick with pre-eclampsia which made the womb a hostile place for him and he was born pre-maturely weighing a mere 3 pounds.  Three days later, he was diagnosed with a heart defect.  As I look back, I realize the prognosis was very grim.  But, despite his tiny size and sick heart, I never saw him as weak.  Even the nurses’ in the NICU called him a wild man.  He was a true Wallace.  A true Braveheart.

Today starts Congenital Heart Defect Awareness Week.  It began in 1999 by an every day mom to a child born with a heart defect in an effort to educate the public and raise additional funding for support and educational services, scientific research, and improved quality of care for our children and adults.  Today it is an international coalition of families, individuals, non-profit organizations, support groups, and health professionals participating in a campaign to increase public awareness of Congenital Heart Defects and Childhood Heart Disease.

 A disturbing, and little-known statistic is that one in every 100 infants is born with a malformed heart.  More babies are born with CHD than with spina bifida, Down’s syndrome and hearing loss. Yet, heart defects are sometimes overlooked and not routinely diagnosed in newborns.   Until my son was born, I didn’t know anyone with a CHD.  Now, I know so many.  It isn’t that it’s rare…I think it’s that we don’t pay attention to a cause until it impacts our life in some way.  I want people to be impacted NOW – before they experience this.  Yes, it’s time we start screening babies for heart defects.  But, until that happens, those of us who have weathered the storm can provide hope for those who are just beginning the journey.   You can read my son’s whole story by clicking on Our Little Braveheart in the blogroll on the right.