chd

Annual cardiology appointment

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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

/ Stephanie / 2 Comments

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 salesforce.com.  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.

Braveheart

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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.

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