Sam’s Story: Congenital Heart Defect Awareness Week

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Welcome Teesa Klear, a High Country Mom, writing her son’s touching story of Congenital Heart Defect. Teesa writes a family blog at The Klear Life.  Her family is truly inspirational.


Congenital Heart Defect

Most people don’t realize it, but congenital heart defects (CHD) actually affect one in every 125 children born, making it the most common birth defect. This week, February 7-14, is Congenital Heart 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 congenital heart defect brugada syndromeseizures. 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 here. 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.

You can see more details of Sam’s story at www.samsbrugadastory.blogspot.com, and you can watch videos on the left sidebar.

Find Little Hearts on their Facebook Fan Page, join their Cause on Facebook, or Follow Little Hearts on Twitter

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Comments

  1. Thank you for sharing this story and being such an inspiration and resource for other families.

  2. Yes, thank you for sharing your story. I’m sure it helps others that have had similar experiences and it helps all parents to realize what special gifts we have from God. May God Bless Your Family!!

  3. From one heart mom to another, thank you for all you do to spread awareness about CHDs. Your family’s story is amazing and inspirational and I can see God’s hand all over it. Love you guys!