Dear parents of a child with Wolff-Parkinson-White syndrome and Supraventricular tachycardia,

I shared Aden's story a few months back, but since then we have many new updates. Aden is our now 3-year-old son that suffers with a condition called Wolff-Parkinson-White (WPW) syndrome and Supraventricular tachycardia (SVT). Basically, it's an arrhythmia disorder that causes his heart to go into tachycardia. The first time we took him to the emergency department (ED) his heart was going at 275 beats per minute. After sharing his story, he continued to bounce back and forth from medication to medication trying to find a combination of medications that would work to control his SVT. The medication would either cause a behavioral change in Aden or it wouldn't control his arrhythmia at all. After many more episodes of SVT and many hospital stays we finally ran out of options. Jonathan Kaltman, MD, Aden's cardiologist at Children's National, recommended that he have a cardiac catheter ablation.

We had discussed this option many times before, but the goal was to wait until Aden reached 5 years of age. That was the size doctors were most comfortable with to put him under anesthesia and perform the procedure. Luckily for us, Aden is a rather large kid for his age. He's only 3 but he's 40 pounds and 40 inches tall. So ironically he's about the size of a 4 or 5 year old anyway. On March 23, 2010, we took Aden to the hospital to stop medication and prepare for his procedure the next day. They felt more comfortable admitting him the day prior since we knew his history of SVT without medication. He did have a short run of SVT that night, but he recovered on his own.

The next morning, March 24th, Aden was taken down to the Cath Lab where he was put under anesthesia. The staff was great at keeping us updated. They told us that it could take up to six hours to complete. Every hour Carol (one of the EP nurses) would come out and update us on how he was doing and at what part of the procedure they were at. They told us that they were able to provoke his SVT easily and that this helped greatly. They did however tell us that when he went into SVT his blood pressure would drop, so they would have to break the rhythm and start again. Eventually Dr. Kaltman and Jeffrey Moak, MD, came out and told us that they found the extra accessory pathway that was causing the conduction in his heart. They burnt it away, but felt they should give it another hour to be sure it didn't come back. An hour later he was woken up and taken to the PACU. He stayed there for a few hours as he came to from the anesthesia. Aden had been put under before so we knew what to expect as he woke up.

It's never a fun thing to see your child like that. It's heart breaking, but we all made it through. After leaving the PACU Aden was taken back up to the Heart and Kidney Unit (HKU) where he had to lay flat for six hours. We were not looking forward to this at all; honestly, we dreaded it. But surprisingly he did very well. He didn't want to do much for the first few hours since he was still "out of it." But we entertained him with playdough, books, and coloring once he was fully awake. The hospital also provided us with the use of their Vectra machine. I recommend anyone that has a child isolated to bed to ask about this. It's the coolest machine and worked wonders to keep Aden in bed. After the six hours was up, Aden immediately asked to go to the playroom. He couldn't wait to go since this is what he does the majority of the time we are on HKU. We were released the next morning.

Since leaving, Aden has been back for his three month post-ablation appointment and everything looks great. No signs of WPW or SVT. He goes back at six months for a check-up, and they said that if there is still no sign of it, he will be considered cured of both conditions. We are so excited with the outcome! Aden is such a joy to have around again. And he couldn't wait to throw out his medications! We are also so excited to live day-to-day and not be confined by hospitals and doctor appointments. Thanks so much to the staff at Children's National and to the amazing cardiology and cardiac cath team! We are so grateful for the care that you gave Aden! 

Sincerely, 

Aden's Mom, Ashley

Aden in the playroom after his ablation.
Aden in the playroom after his ablation.
Close
Top

JOIN US ON:


Video: Transposition of the Great Arteries, A Parent's Story

Cardiovascular (heart) conditions and diseases - Letters

 


«  Prev 1 2 3 4 Next  »