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Saturday, February 13, 2010

CHD - Congenital Heart Defects

Most people don't realize it, but congenital heart defects (CHD) actually affect one in every 125 children born, making it the number one birth defect.  This week, February 7-14, is Congenital Hearts Defect Awareness Week.  As someone who has been personally affected by congenital heart defects, I have made it my mission to raise awareness about CHDs, specifically an arrhythmia called Brugada Syndrome, my three year-old son's rare condition.  This is his story.

Sam was born to me in Hong Kong on October 2, 2006. He lived for the first six months of his life in Kunming, China (with us) and was a very active and healthy little boy. When he was just six months old, we moved to Raleigh, NC.

He was just about to turn 11 months-old when he got his first virus. He woke up with his first high fever. He was a little out of it, but sitting on my husband,  Bill's, lap when he had a febrile seizure. We called 911, went to the hospital and were sent home with the information that febrile seizures only happen once. Two hours after arriving home, he had another one. His temperature was at 102.9F and climbing when he had another febrile seizure.

We called 911 and the EMT on the scene couldn't get a pulse-ox on Sam. He took an ECG on the ride over to the hospital and saw that Sam was in VTAC(his heart was beating over 300 beats per minute).

The hospital thought the ECG was inaccurate, as he was in a semi-regular rhythm when we arrived. No one had ever seen a child who was almost 11 months-old have VTAC before. The pediatrician on-call phoned every hospital in the area and there were no beds. Finally, UNC Hospital accepted us. 
 
 

The doctor recognized Sam's condition as Brugada Syndrome and often masquerades as febrile seizures. He tested Sam with a simple 12-lead ECG (among other tests) and Sam was released from the hospital on Tuesday, with a cardiology appointment on Friday.
 
 

He was officially diagnosed with this heart arrhythmia and scheduled for surgery to implant an internal defibrillator on the following Tuesday.  That day Sam became one of the youngest children in the world to receive a defibrillator at the tender age of 11 months-old.  He is also one of the youngest patients to be diagnosed with Brugada without a sibling having already died from it.  His DNA has been tested and he does not have the most common type of Brugada, rather one that they have never before seen.
 
 

Although most children who have a CHD actually have a "plumbing" or structural issue, Sam's CHD is an electrical issue.  This makes surgery to repair it or a transplant impossible.  I have also heard that Sudden Infant Death Syndrome (or SIDS) is often caused by either Brugada Syndrome or Long QT Syndrome (another heart arrhythmia).  

In Sam's case, his heart goes into an arrhythmia (usually over 250 beats per minute) when he has a high fever, though as he has grown his heart has been able to tolerate fevers.  He also has difficulty with an electrolyte imbalance.  Both of these, high fever AND electrolyte imbalance, are common with every childhood illness.  As you can imagine, we have spent a great deal of time in prayer and God has given us rest and peace in this season of our lives.

Sam recently had another surgery to repair a wire from his defibrillator that wasn't reading properly.  He will continue to have surgeries to replace the defibrillator every three to five years for the rest of his life.  Once his body has matured, they will move the defibrillator to his shoulder, rather than his belly.  At this time, his belly is the only space available in his tiny-body.  

For more information on congenital heart defects, please visit www.littlehearts.org or leave a comment.  Most parents of a CHD child are happy to share their story, as we all need to bring more awareness to this very common defect.



Teesa Klear is the stay-at-home-mom of two children, one biological and one adopted, but both from China.  She also works as the Children's Minister at her church and is active in her local The Mommies Network community, www.HighCountryMommies.com.  She blogs about her adventures in adoption and as a heart-mommy at www.klearlife.blogspot.com.
 
 

3 comments :

  1. I lost my 22 year old daughter, Emilie, when she died in her sleep from an undiagnosed case of Long QT Syndrome.

    Since electrolytes are so important, something I do (because I have the LQT-2 gene which has to do with the potassium channel) is keep Pedialyte in the house for any of us that suddenly become ill. Then you don't have to worry about running to the store either when you, or your child is ill. Be sure and check the expiration date--if you keep it in your pantry.

    I'm so happy you were able to save your little guy by receiving the correct diagnosis and an ICD.

    Did you know about the group called Parent Heart Watch?

    We have a newly designed web site at: www.parentheartwatch.org

    Also you can obtain lots more information at:

    www.sads.org
    or
    www.longqt.org

    Both sites have information for professionals, and also have information on Brugada's syndrome.

    God Bless You & Your Family.

    ReplyDelete
  2. Thank you for your story. My son had a coarctation of the aorta repair when he was five months old. We will celebrate his one year anniversary of a second chance at life next Wednesday.

    ReplyDelete
  3. Thanks for sharing your stories! I think there are quite a few heart mommies on The Mommies Network!

    I've checked out SADS and have applied for a membership. What a great foundation!

    We celebrate my son's first surgical procedure every year by planting something. What an amazing life he leads! I appreciate everyone's encouragement.

    ReplyDelete

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