Life + Style

February 6, 2015

St. George, The Dragon Slayer | Congenital Heart Defect Awareness

 As some of you may know, our daughter was born with a severe birth defect that required cranial surgery at both seven weeks and nine months.  It was not detected on an anatomy scan as it should have been.  Or rather, the defect was shrugged off as a faulty equipment reading caused by a the position of the baby.  We were shocked and unprepared for a challenging delivery and infant with an obvious issue.  Nothing bleeds like a mother's heart for her suffering child.  It was horrible and life changing, but it was over as quickly as it began and she is fine.  Through that ordeal, I grew an incredible compassion for families affected by childhood medical issues.  My heart literally aches for those whose defects or illness aren't so swiftly and permanently corrected.

I'd like to talk to y'all for a minute about my little friend St. George.  He's a dragon slayer.

George was one of 1-100 children born each year with a heart defect.  Think that number is high?  It's not.  How many of you were told just after delivery that your baby had a slightly irregular rhythm or small hole in their heart that would most likely heal itself?  That was my second child, and it did within weeks.  Remember how frightening and devastating that felt? 

Imagine if it didn't go away on it's own.  Imagine if your baby had a defect so life-threatening that it would take a lifetime of surgeries and procedures just to keep he or she alive.  That is little George's reality and his incredible Mama, my friend Elisabeth, has used her platform to share George's courageous story and to help bring some awareness to Congenital Heart Defect Awareness.

In return for our public awareness and prayers and encouragement for her sweet baby boy, she offers the world the gift of sharing a glimpse into the life of her two well-dressed, outrageously adorable boys being little boys.  Pretty fair trade-off.  She is showing the world what the face of a life-threatening birth defect looks like and how you can over come.

Many people think of the 20 week anatomy scan as the “gender reveal” ultrasound but the point of that ultrasound is actually to check ALL the baby’s anatomy - heart, lungs, liver, kidneys, brain, etc - development. Sadly, not all stenographers are created equal so there are some key questions people should ask at their anatomy appointment. Also, it is so important to get second opinions.  George would not be alive had his parents not insisted on a second opinion.  I’m not being sensational, it is fact.

Elisabeth was part of an awareness video before George was born, developed by Boston Children’s Hospital and these are the questions George’s cardiologist (and a panel of other cardiology experts) put together as what needs to be asked about the heart at the anatomy ultrasound.  Asking this as well as insisting on a pulse ox scan (a non-invasive test to determine the oxygen level in the baby’s blood) after birth can make all the difference in early detection.

1. Can you see all 4 chambers of the heart?
2. Do the two upper chambers have valves? Do those valve appear to be controlling blood flow correctly?
3. Are there two lower chambers that are pumping blood to the body?
4. Are the valves / vessels exiting the heart in a crossing fashion?
5. Do you see any large holes in the heart?

Here is all I'm asking of you today, just to be aware.

1. To bring more funding to congenital heart defects so there can be more innovation and fewer children will die from this.

2. To help more people have early detection of congenital heart defects so they can be treated proactively.  

If you find your heart (pun intended) moved as I have been by sweet St. George and his life-long journey slaying dragons click here to learn more about his story.  You can also read the piece written by Children's Hospital after his first open-heart surgery and the follow-up story for more information.



  1. I am the Child Life specialist for a cardiac intensive care unit and I love love that you are bringing awareness about congenital heart defects!! Next we week our unit will be celebrating CHD week and I am looking forward to giving a little extra love to all of my patients and their families for what they have to go through. Can't wait to read more about St.George!

    1. Yes! Such incredibly work you are doing. Those families do need extra love! I'm happy to be able to talk about it here!

  2. My sweet friend's baby boy was diagnosed with the same condition as George at her scan, but sadly the right side of his heart was also failing. I directed her to Elizabeth and sweet George (who I'd started following on IG thanks to you) in hopes that her story would have a happy ending like his. Sadly it did not but I pray daily for little George and all children (and parents) who must deal with such scary diagnoses. Thanks for always bringing awareness to such important topics!

  3. What a precious little fighter. Working at MUSC, I came across more families than I would ever like to admit that have been stricken with heart defects and other terrible diseases and disorders. It's so easy to take life for granted, so it's amazing to see posts like this that bring awareness. Praying for sweet George and his parents!

  4. This is such an important topic! I am praying for this sweet boy and his family. What an incredible recovery story. St. George's sounds like a wonderful care place.

  5. Oh my gosh this is an amazing story, what a strong brave family! I think I may print out this list for my next sonogram!

  6. I follow Elisabeth on IG and her account is one of my favorites! Such a sweet family!

  7. Lots of prayers comnig St. George's way and all the children and families that deal with these issues.

  8. I love this and I adore George. The first time I met him I was in love. Elisabeth is an amazingly strong woman and George is a fighter! I cried so many times when he was in the hospital - my heart was broken & now I smile daily when I see his smiling face! Thanks for sharing - it was a very lovely post.

  9. An amazing story and I am so thankful for you sharing it! A dear friend of mine was born with a similar heart condition and is sharing his story every day to spread awareness for early prevention. Xo, Stephanie

  10. Thank you for sharing. When I was 20 weeks pregnant with my twins, on the ultasound they could only see 3 chambers in one of the twins hearts. Luckily, my doctors were amazing, and explained to me what was going on, and insisted that I come back in 4 weeks to see if it was the equipment or a serious issue. It was the longest 4 weeks, and we were lucky, because the ultrasound showed 4 chambers. But sense then, I am been very aware of stories like this, and pray for all those who are dealing with it. You are brave, George and his mommy are brave, and all people who deal with heart defects are brave.

  11. Thanks for sharing! I have two sweet friends whose babies were both born with congenital heart defects this year. One was detected prior to birth and the other was after. Awareness is so important! Prayers for your sweet George!

  12. What a powerful and beautiful story. Thanks for sharing!

  13. My nephew was born with a congenital heart defect known as tetraology of fallot. He had three operations before he was seven months old and had a fourth when he was seven years old. He is ten now and every time I look at him, I marvel at how well he's doing! He is a bright, energetic and spirited boy who is flourishing beautifully. Thanks for sharing this! And prayers for George!

  14. I was reading your article and wondered if you had creating an ebook on this subject. Your writing would sell it fast. You have a lot of writing talent.
    Zofran lawsuit faqs

  15. That 20 week scan was so important. All the doctor said was you have a picture perfect baby. At 28 weeks she developed an irregular heartbeat and lost three weeks growth. They said don't ,worry come back in a week ,but we don't have any openings, we will see you in nine days. In nine days our baby was gone. The ultrasound on multiple occasions they missed a two vessel cord when it should have been 3 vessels. Her cord was long . After being insistent on what happened we were told she developed a clot in the cord. At 29 weeks she had a 90% survival rate. If only they had seen this defect she could have been sent to a high risk specialist. We just celebrated the third birthday of our little angel. I have become against in house ultrasound that doctors just randomly say the tech says it's fine.


Thanks for joining the conversation!

Blogger Template Created by pipdig