Wolff-Parkinson-White Syndrome Stories of Hope is an effort by the Dwayne Have A Heart Foundation to raise awareness of Wolff-Parkinson-White Syndrome. WPW is a rare and sometimes fatal congenital heart disease. It claimed the life of our son 19 year old Dwayne Christopher Mitchell, March 11, 2016.
Doctors say Wolff-Parkinson-White Syndrome can oftentimes be detected by a simple EKG test. As we continue to heal from our loss, the Foundation strives to educate the public of the existence of this disease, share steps parents can take to protect their children and advocate for EKG testing to become mandatory for children upon entry to school.
It is our hope that Dwayne’s legacy will be to help prevent tragedy from striking another family. As we continue to share our story we are inviting others to join us in this cause. We’re asking you to share your personal stories so that we may spread as much information about Wolff-Parkinson-White Syndrome as possible. Our first message of hope is from Yanira Alos and her son Alexander, whom she calls The Miracle Baby. ~Chris and Shantell Mitchell – Dwayne Have A Heart Foundation
My name is Yanira Alos. I’m the mother of Alexander G. Alos, a Wolff-Parkinson-White (WPW) Survivor. I was pregnant at twenty-four weeks when I went in for a regular monthly check up with the OB/GYN. At that time they heard Alex’s heartbeat at 290 beats per minute (BPM). I was immediately referred to a Pediatric Cardiologist at Jackson Memorial where they ran test after test.
When they [doctors] finally had the results of all tests, they sat me down and said, “As hard as it may sound we have to tell you how it is. There is a 95% chance he dies and a 5% chance he survives. His head is full of amniotic fluid and so is his stomach. His heart rate is at 295 BPM, he has Severe Tachycardia. We have to start you on medicine that is toxic and if you have an allergic reaction or it starts affecting you, we have to stop and he will die.”
I said start NOW! They said we won’t see any changes until about 72 hours, I said start it now please. I was in the Intensive Care Unit (ICU) for five days, hooked to tons of machines, monitors, etc. The next night they took me in to do a sonogram and they said they had seen a miracle – a miracle that in such a short period of time my son had taken in the medicine and his heart beat had dropped. Immediately he was named THE MIRACLE BABY!
I was in the hospital for a total of twenty-three days until I was released home. At the time of release, my son’s heart rate was normal: no more tachycardia, no more amniotic fluid in the head or stomach. I continued to take my meds and made three-times a week visits to see the Pediatric Cardiologist to check my blood levels and for sonograms.
Alexander was born a preemie at only thirty-five weeks. I was in labor for 23 ½ hours. Alex was in the Neo-Natal Intensive Care Unit (NICU) for almost one month. At ten days, Alexander went into surgery as he had an Intestinal Malrotation. What was supposed to be a simple procedure went on for tons of hours as he wouldn’t wake up from the anesthesia and was placed in a ventilator. Finally after 8 hours, he started responding and was removed from the ventilator. After tons of test were done in prepping him for his Malrotation surgery; this is when they diagnosed him with Wolff-Parkinson-White Syndrome. We had never ever heard of this syndrome. They [doctors] sat us down and explained everything.
Three days after this big scare, Alex went into Supraventricular Tachycardia (SVT) and his heart rate was at 300 BPM. SVT means ‘that from time to time the heart beats very fast for a reason other than exercise.’ Doctors ushered everyone out of ICU into the waiting area. I started panicking, they took us out, not knowing what was happening to my son. They were able to control him and started him on meds ASAP. For the first two years of his life, we were in and out of hospital due to Alex’s SVT attacks. Each time we had to take him to the hospital he was hospitalized one to two days until he was good enough to be released.
He would also get febrile seizures. One of the medications he would take daily affected his Thyroids and the doctors said I needed to dose him off slowly and that the next time he gets an SVT attack he has to go in for surgery. Sure enough, Alex had an ablation procedure at the age of just two years old. The day of the surgery it took eleven attempts for the procedure to be a total success. Alex was seen after surgery for one entire year and then was released to regular daily activities.
We are beyond blessed to know that God was in control always. Our faith & GOD worked miracles for my baby boy to be alive. Today Alexander is 12 years old, a very healthy young man that enjoys life to the fullest.
This is my story!
We want to hear from you! To share your story of hope: