Aden's Story: Parent's Letter ProjectWolff-Parkinson-White syndrome and Supraventricular tachycardia- Aden's update
When our son Aden was about one we had a very scary experience that landed us in our local emergency department. Our son's heart rate was at an amazing 275 bpm. We knew nothing about this happening, what the risks were, or what would cause it. It was terrifying seeing our son screaming as the doctors ran around, you could see the seriousness of the situation in the doctor's and nurse's eyes. They fumbled around giving him an IV and had to stick him about 20 times. During this time, he had gotten so upset that he broke himself out of the tachycardia. They decided that they were going to fly him to another hospital and so he was flown to a prominent hospital in Baltimore. We weren't there long before they explained to us what the problem was, that it was an episode of supraventricular tachycardia (SVT), and that we could go home.
We left and decided that we would contact one of the fine doctors at Children's National. We decided to see Jonathan Kaltman, MD. Aden had many more episodes of this rapid heart rate before we saw the doctor for our first appointment.
Not knowing much about this condition we were very lost and confused, and had many questions. They were very polite and informative, and answered any questions that we had. Since that first consult we have been through many different types of medications in the hope to control his SVT. We haven't had much success. He's been in and out of the hospital more times then I can even count. Some for medication changes, others for stubborn cases of SVT. We recently found out that it was Wolff-Parkinson-White syndrome (WPW), which is actually good news they say, because it makes it easier to ablate when we decide to do that. This option may be our last as we are quickly running out of options. We were offered the latest medications since nothing has seemed to work up until now. We pray that this medication continues to work, and he can stay out of the hospital for a while. We hope to get him closer to the ideal weight and age for surgery before we have no choice but to do it.
We recently found out that my husband suffers the same disorder as Aden, he too has WPW. He had an ablation a month or so ago, and hasn't had any issues since. This is promising for us when it's Aden's time to go in.
If you are in the same situation that we are, it's helpful to know others that are in the same situation. To know that there is hope that things will get back to normal sooner then later. Hang in there and things will get better soon! You couldn't be in a better hospital then Children's National! The EP nurses (Beth, Vicky, and Carol) are amazing, and the nurses in Heart and Kidney Unit (HKU) and Cardiac Intensive Care Unit (CICU) are incredible as well! Good luck!
Aden's Mom, Ashley