Saturday, November 27, 2010


Someday soon the acute phase of my son’s heart defect will end, and I will have a typical little boy with a really cool scar.  We’ll have a couple extra doctor visits per year and otherwise life will continue.  Maybe someday he’ll have to revisit this again, but it won’t be our world again for a while at least.  This is an incredible miracle, but it comes with a price.  Congenital Heart Defects are the #1 birth defect worldwide.  They span all races and genders, affecting between 1 in 85 and 1 in 125 births.  Yet, most people don’t even know they are a concern.  Hospitals could easily perform a simple non-invasive test to check blood oxygen levels right before they send babies home and catch about 50% of the undiagnosed heart defects, and the test takes only seconds.  With a specially trained operator and a special ultrasound, they could actually do an echo on every baby to make sure everything looks OK. The tests are neither painful, invasive nor incredibly time consuming, and they would save lives. 

The odds suggest that I, like so many mothers before me, will get caught up in the struggles of everyday life and forget how hard this time was and how important researching these defects and supporting the parents who have to live with them are.  Maybe I’ll do a heart walk once a year; maybe my son will have an extra birthday celebration on his surgery date.  But life will sweep us up and carry us far away from the immersive world of complex congenital heart defects.  Given that heart defects are the most common defect and the fact that almost everyone you talk to knows someone who has a friend, child or parent who has one, you’d think that these heart conditions would receive intensive funding and public notice.  But they don’t. 

Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD.  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

I was born with one of the most common heart defects, a ventricular septal defect (VSD), 14-16% of all CHDs are VSDs.  My son was born with an Atrioventricular Septal Defect (AVSD or AV-Canal), 4-10% of all CHDs are AVSDs.  My son spends an hour to an hour and a half out of every three hours eating.  He breathes so fast that he can’t suck swallow and breathe a “normal” babies do.  Instead he holds his breath, takes a couple of swallows then has to breathe heavily for a while so that he can start all over again.  But really, he manages very well, it gets harder as he gets bigger, but he’s still gaining weight and he is happy.  Without surgery, it won’t be that way much longer.  But really, our kids don’t LOOK sick.  They laugh and play and giggle and coo.  Sometimes their skin takes on a bluish tinge, sometimes they may breathe faster than the average infant.  But most people will never be able to tell they are sick just by looking at them. 
Our kids generally don’t become pale and thin, they don’t get the characteristic bald head of a child undergoing chemotherapy.  Their hearts are sick, but no one can see it, and when they could see it, they don’t want to.  Newspapers have refused to print pictures of babies just after open heart surgery; they say the pictures are too much and would offend readers. 

Really, I’m here to tell you, heart defects are pretty damn offensive, so I’m ok with someone getting a little sick.  It is sickening, and scary and hard… We need to fund research and find better and earlier interventions to save these children.

I understand why we walk away once our children are healed.  I understand why society can’t see the illness our children are suffering from, and because it isn't visible, its easy to ignore.  I also understand that this has to change and we have to work to find a better solution for these terrible defects.  40,000 children will be born with a CHD this year, 10% of them won’t see their first birthday.  There isn’t an easy answer, but we have to somehow stop walking away once our children are healed.  CHDs are a hidden disease and we have to find a way to bring them to light.


  1. This is a really wonderful and important post. You've written this so well.

    I agree with you, more people need to know about this.

    Would it be OK for me to link to this post from my Livejournal and Facebook? I think it's so well written and so well-done that it's a great way to get the word out there.

  2. christine- i'm going to post this blog post in my blog and on twitter and facebook.

    thank you for writing this.

  3. Please feel free to post this wherever you'd like, and thank you for reading it! I'm glad it conveys the message.

  4. Great post Christine!

    Melissa & Josie

  5. Wonderful piece. I will put it on my FB page


  6. Thanks for posting this. A friend of mine linked to this and that's how I found it. I can't help but think about the reasons for the lack of research...and I - at the risk of sounding like a conspiratist - have always thought it came down to money and the fact that since there are just not a lot of chemical/pharmaceutical ways to help with CHD's as compared to say, cancer, then that could be why there is 'funding' (investment opportunities for future financial gain) for the cancer 'research' (the uncovering and unveiling and packaging of another pharmaceutical for the treatment of cancer). Mind you - there doesn't seem to be as much research dedicated to the PREVENTION of cancer as the public TREATMENT of cancer that I know of - but anyone feel free to correct me if I am wrong. The research for prevention is not as lucrative, and there's not as much financial gain to be shared.
    I guess what I am trying to say is that awareness might not be everything that is needed for CHD. It might not get all the attention that cancer gets. I do love your writing here though. I do know a few people that have struggled with these and other medical issues that are not researched well, and I am truly grateful for your words here that give me another picture and glimpse into the world of another family. :) Thanks for sharing! Blessings to you and your family!!!

  7. My daughter has partial AV canal - and we can't walk away, not even after 2 open heart surgeries. Her valve is badly deformed and her cardiologist is buying time until she gets bigger because when, not if, she needs another surgery, this time they will need to replace the valve. He is always hoping for more developments in peds cardiology to benefit her and thousands of others like her. Your post reminded me of our wonderful cardiologist. Yes, a lot of it comes down to funding. And no one else is going to care like we heart parents do. Thanks for a great post.

  8. I read this after seeing a link from a friend on FB. I was born with AV Canal and pulmonary hypertension, but I wasn't diagnosed until I was 9 months old. Neither has been corrected, and I continue to live 35 years later with both. A lot has changed since 1975, with so many medical advances since then, but if a test can easily be done on a baby before they go home to see if there are heart defects, it would save so many parents and children from grief in the future. Great post!

  9. Christine thank you so much for such an amazing post. I too am the mom of a heart baby who is better and may or may not need surgery later on in her life. It is easy to walk away from this all. Close your eyes to the sadness. Thank you for the reminder that we must all continue this fight. It's good to see it every now and again! Thank you and if it is ok I would like to share this post on my blog.