Thaddeus' Heart Story

At a routine ultrasound on the same day that we found out that we were having a son, we also found out that something was wrong with his heart. Two weeks later, we made our first trip up to Doernbecher Children’s Hospital for a fetal echo and received a diagnosis, Transposition of the Great Arteries, d transposition, meaning he also had a fairly large VSD. We were given a Heart Notebook and a book about CHD. I remember asking the doctor what caused it. His reply was bad luck. We left, still scared, but somewhat reassured that success rate for the ASO surgery was around 95% and that most kids went on to live normal lives afterwards with no limitations.

 

We were carefully monitored by neonatology and cardiology throughout the rest of the pregnancy and on 9/1/2011 at 9:17 am, our son was born. We chose the name Thaddeus because it meant, “has a warriors heart”. Thaddeus was taken directly to the resuscitation room and then to NICU. The next day as Thaddues oxygen levels kept dropping he had a Balloon septostomy and cardiac cath to increase the size of his ASD and allow some oxygenization. Later on, the surgeon, Dr. Langley met with us and explained that Thaddues heart was more complex then they had thought. His TGA was not typical and that instead of the arteries being front and back, they were actually side to side meaning that when they did the swap, one piece would be to short and they would have to build a bridge using bovine heart. Also his VSD was much larger than previously thought and crescent shaped and new images confirmed pulmonary stenosis and they would need to do some reshaping. He warned us that this made surgery harder, but that he was still optimistic.

 

Thaddeus had his open heart surgery 9/6/2011. Due to complications, it lasted a grueling 13 hours, more than 6 of that on bypass. After surgery Thaddeus went into JET heart rate which then converted to heart block. On 9/15/2011, he went back into surgery for a pacemaker.

 

After almost a month in the hospital we discharged with left vocal chord paralysis and a feeding tube and began to settle into a routine. We made peace with the pacemaker and over the next few months, the vocal chord paralysis reversed.

 

On 2/7/2012 at a cardio check, upon echo it was discovered that Thaddeus pacemaker had been firing across rather than bottom to top. As a result, he had developed pacemaker induced dilated cardiomyopathy and was in heart failure. We were sent up to DCH to await further tests and surgery.

 

On 2/13/2012, Thaddeus underwent surgery for biventricular pacemaker. Unfortunately, he has had no improvement in function at this time. He also started medications to help manage his heart failure. Thaddeus takes a beta-blocker, ace inhibitor, lasix, and asprin therapy as well as iron and medication for reflux. We have been told that we will most likely be looking towards transplant down the road.

 

Despite all the struggles life has put in Thaddeus path he is always happy and smiling. To meet him, you would never guess all that he has been through. His growth, development and good nature continue to both surprise and please doctors, nursing staff and family members. As our beloved Dr. Silverbach says, “I wish the tests matched the baby.” Thaddeus is setting his own path. We know it’s a long road ahead of us and that things are at a very critical point. We also know that despite the statistics, there is only one Thaddeus and if anyone can beat this it is him. He has truly earned his heart warrior name.