Xander Havelos’ Story

Xander was born September 4, 2002 at a whopping 8 lbs 15ounces.  He was born with Dextrocardia, Single Ventricle (SV), Congenitally Corrected Transposition of the Great Arteries (CCTGA aka L-TGA), Double Outlet Left Ventricle (DOLV), severe Pulmonary Stenosis (PS), large Atrial Septal Defect (ASD), large Ventricular Septal Defect (VSD), AV valve leak, and Wolfe-Parkinson-White syndrome (WPW…defect of the electrical system). 

I had a healthy and uncomplicated pregnancy, with 2 ultrasounds done at the hospital during my pregnancy, one at the usual 5 months and again at 8 ½ months for fear he was breach.  We never were given any indication that his heart was far less than healthy and normal.  So based on the information that all was healthy with our baby and our first child we planned our delivery at a regular hospital thinking things would be fine.  After a long and hard labor, I was finally set up for an emergency c-section, which ironically had nothing to do with his heart.  This in turn ended up being a blessing in disguise.  As I was prepped for my c-section it was discovered there was some meconium.  After he was delivered it was discovered that the cord was wrapped around his neck twice.  Due to the meconium they did not let him cry right away and after what seemed forever, we finally heard his cry.  We were told he was okay.  Oddly enough I however, had this horrible feeling something else was wrong, which my motherly instincts, although new, I would soon find out were right on. 

Approximately 20 minutes after he was born he started having SVT (supraventricular tachycardia), which means a very fast heart rhythm.  His heart rate went from 150 to over 200, finally getting up to about 250.  The nurses and doctor at first thought it was due to the meconium and that he had aspirated some.  Then they saw the chest x-ray, which showed his lungs were clear but also showed he had a very different heart.  My doctor, Dr. Frayne then started to call another hospital to get him transferred to which was in Asheville NC, 2 hours away.  Because of the fog, which is very common in the mountains, they were not able to send the helicopter so we would have to wait for the ambulance.

My mother (who is also a NICU nurse) and I sent my husband back home to get a few hours sleep before traveling down to Asheville to be with Xander.  We had been up for the past 48 hours so we did not want him driving without a little rest.  In the mean time they were getting Xander ready to go.  At 5:00 am the transport team arrived, and at 5:30 am they brought him into my room so I could see him before he left.  He was already in the transport isolate and his head was turned so I could not even see his beautiful face.  I rubbed his arm and told him every thing was going to be okay and I would be by his side soon. 

I finally got the call that Xander was at the hospital and the doctor was looking at him. Soon after I got another call from Dr. Tripp, Xander’s cardiologist, they were transporting him yet again.  Even though they are equipped to care for heart babies, they do not do surgery so they were sending him to Duke University Medical Center, by helicopter this time.  I had to call my husband who was on his way down to Asheville to tell him to turn around and head to Duke instead, which is 3 hours away from us.  So on a day that was supposed to be the most magical of days ended up being the scariest.  We were a brand new family that was instantly torn apart at a time that we needed each other the most.

At Duke, my husband was met by a group of 6 different doctors all trying to explain Xander’s heart to him.  Dr. Jaggers, who then becomes his heart surgeon, explained that he would do a series of 3 surgeries.  The first of which took place the next day, the BT-shunt.  The next surgery would be the Bi-directional Glenn.  The last surgery would be the Fontan.  My husband calls to explain all of this to me and the whole time I am an emotional wreck because since I had the c-section I was not allowed to leave and be with my newborn son like I should have been, knowing  he soon would be having heart surgery. I finally arrived that Saturday and was finally with my son where I belonged.

He came through is first surgery well and was sent home with a pulse oximeter to have periodic readings taken three times a day.  Set up with home health care and lots of medicines. He was home for 5 days and then had another SVT episode and in the ER with an overnight stay in the hospital.  Then on October 11, 2002 he had another SVT episode.  This night would prove to be a test of Xander’s strength and our faith. 

This night we had just put him down to sleep when I got this really weird sinking feeling, so I laid my hand on his chest and he was in SVT again.  I hooked him up to the pulse ox and his heart was beating so fast it was not able to keep up, it keep reading from 190 to 230.  I listened with the stethoscope and could not keep up with the beats.  I tried one of the vagal procedures they taught us the last time he hand SVT, by putting his knees to his chest, but it did not work.  I would not try the ice on the forehead because I was not comfortable with it and would not do it unless the doctor told me to again.  So we went into action, got him loaded up in the car and off we went to the ER. 

The ER doctor talked to Dr. McGovern, one of his cardiologists, and it was decided to try the ice on his forehead again.  He put the ice on for 30 seconds and then took it off.  Next he listened to Xander’s chest and the look on his face we knew right away something was terribly wrong.  He told the nurses to get him out of the car seat ASAP, start CPR, and get the crash cart.  He had gone into Ventricular Fibrillation or V-Fib.  It is a very lethal heart rhythm that if not treated right away will cause death.  Basically he was in cardiac arrest and he was dying.  His heart rate had gone up to over 300 beats.  He was having lack of oxygen and he had become unconscious.  We were stunned, numb, upset, crying and confused all at the same time.  Xander was hooked up to the defibrillator and when we heard “Clear, shocking” we felt like we were in a horrible TV show.  The worse thing we have ever seen in our lives was to witness our baby of 5 weeks old being shocked back to life.   He was down a total of 8 minutes that felt like 8 hours, with having gone into v-fib twice.  With a Chaplin by our side, we were finally told he was back and stabilizing and they were prepping him for transport to Asheville.  This was the worst 2 hour drive ever, because we had no idea if he was going to be alive or not when we arrived.  My worst fear was he would pass away without us by his side.

He was put on a med called Amiodarone.  It is a very potent medicine for adults let alone a baby.  As one of his cardiologist called it “A nasty drug for a nasty arrhythmia.”  It is VERY uncommon for someone to go from SVT to V-Fib and even rarer for a baby to do so.  We were told numerous times you just don’t see that in babies, all we could think was “well now you have, so please let’s keep it from happening again.”  Xander was then sent home on a heart monitor for the next 5 months until his next surgery.

In addition to his hospital visits and SVT episodes he also had an intestinal problem as a result of an extremely high calorie diet that sent his intestines into overload.  He had about 8weeks of bleeding in his stools, after being put on a high calorie pregestimil formula diet that subsided. 

After talking with Dr. Tripp, and consulting with two electrophysiologists, it was decided that Xander should have a procedure called Radio Frequency Ablation, to burn off his extra electrical pathways that were causing his lethal SVT attacks.  Normally this is done around 4 years of age, but due to the severity of his SVT attacks and the surgical approach for his heart defects, it was confirmed that 6 months old was going to be the best time for him to have this done.

So in March of 2003 he had the ablation.  The procedure took 6 hours and so far it has been successful.  He is completely off his arrhythmia med and heart monitors.  The following week he had his second heart surgery, the Bi-Directional Glenn.  Then in March of 2005 (this is a good month for us), he had his 3rd surgery, the Fontan.   In October of 2005 he had a vascular plug placed in his pulmonary stump.

Today Xander is happy, healthy, and growing like a weed.  He had a long hard beginning with a lot of ups and downs.  But he has come through on top and we continue to pray he stays there.  He plays T-ball, learning to play basketball, and has taken swimming lessons since he was 10 months old.  He is a very loving, smart, and comical little guy.  In November 2006 he was granted his Make A Wish trip to meet Shamu, what a magical time for him!  Xander brightens our day and melts anyone’s heart who meets him.  We are so thankful for his wonderful doctors who always keep his best interest at heart…literally.  Xander will always have heart caths ahead of him and we know there is the chance for more surgical procedures or even possibly a heart transplant down the road for him.  But for now we enjoy every day as it comes and thank God for blessing us with such a special little boy.

I think my greatest hope from reading Xander’s story is the fact that more awareness really needs to be made to CHD’s, especially in prenatal diagnosis.  Had we been properly diagnosed during my pregnancy we could have been better prepared on where to deliver Xander and he would have had the immediate care he needed.  In addition our family would have been together at a time that no family should EVER be apart. 

Thank you for reading our story…warm heart hugs!
The Havelos Family:  Tommy, Kim, and Xander (our true warrior and our greatest hero)