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Jude's story


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  #1  
March 2nd, 2009, 12:43 PM
Mega Super Mommy
Join Date: Jul 2008
Location: Carroll Valley, PA
Posts: 3,168
Jude was born October 27, 2004 just before 6pm. He was born 3 weeks early due to IUGR and he also had the cord around his neck twice. He was whisked away by the NICU staff within minutes of his birth. Afterwards, when we were visting him in the NICU we were told that a murmur had been heard and that the next morning he would have a Echocadiogram. The Echo was done via satellite with Children's Hospital in Washington DC. (The hospital he was born at had no pediatric cardiologist on staff) I was in the room and was able to watch and talk to the Cardiologist while it was happening. They determined that he had a small Ventricular Septal Defect. The next day, he also had a routine EKG done. During this test, it was discovered that he also has a electrical defect called Wolff-Parkinson-White Syndrome. The only way it's detected is by EKG. You can't hear it. It causes an accelerated heart rhythym which is not managed, can lead to heart failure. Anything can trigger an attack, especially caffeine, cold meds, stress and anxiety and a slew of other circumstances. We wer sent home with a stethescope and told to count his heart rate at each diaper change, and were told all the signs and symptoms of heart failure and cardiac distress. We followed up with the cardiologist his first week home. We didn't like the Cardiology team from Children's in DC at all. At his 3 month vist, we met with Dr. Brenner from Johns Hopkins. He was fantastic and assured us the VSD had in fact already closed on it's own. The WPW is currently asymptomatic and being monitored. With the WPW, problems tend to arise during early adolesence. So he'll be monitored more closely as he gets older. He will be limited from certain sports. If he starts having SVT (Supra Ventricular Tachycardia) attacks common with WPW, they'll treat with Beta Blockers first. If that doesn't control it, then we'll be looking at a Ablation procedure to correct the abnormal heart beat. The procedure don't aways work though for WPW patients. So right now we're just playing the waiting game...
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  #2  
March 6th, 2009, 12:50 PM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Thank you for sharing Jude's story, Janel. I am glad you found a cardiologist you like.
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  #3  
March 7th, 2009, 03:41 PM
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Join Date: Oct 2004
Location: *queen city* of North Carolina
Posts: 9,497
We're playing the waiting game too. Its hard (enough said!)
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