Team Travis: HLHS

Sunday, August 9, 2009

HLHS

This is hard to share but we want everyone to know. Unfortunately we got the bad news that we had been praying against. We went on a week and a half ago for the Fetal EKG. The doctors took a long look at his heart and then shared the bad news. Travis has what is called Hypoplastic Left Heart Syndrome with a common atrium. His Left Ventricle never fully developed properly and will not be able to function without intervention. Additionally, his atriums are not separate into two chambers....it is one by itself. This syndrome happens spontaneously in 1 out of ever 10,000 births. Years ago, it was a death sentence. Fortunately, there is now a well defined surgical approach to his condition...it is a series of three complex open heart surgeries spread out over the first year of his life. The first surgery would need to be immediately performed after birth. The surgeries (in essence) will jerry rig his two chamber heart to function as a regular four chamber heart. Since these procedures (called Norwood/Fontan) have only been around for 20 years or so they only know the possible life expectancy of 20 yrs. However, the 20 yr patient is still doing well. We will not know the severity of Travis' heart until later. They are planning to do a full study on August 18th and then we will need to meet with the surgeons at Children's Hospital in LA to discuss delivery (probably will be via a scheduled c-section) and what will happen afterwards. Travis will likely be in the NICU for the first few months of his life and he will need one on one care for the first year of his life. We have so much to figure out. Our heads and our hearts feel so heavy. As you can imagine we are beyond scared and full of grief.

What is supposed to be the happiest time in our life is now so uncertain. It hurts that God has picked Travis to have to go through all this. We just keep thinking how unfair it all is. We are trying to keep ourselves busy. We know you will all be concerned...and thank you. This is really going to be a trying journey. PLEASE keep Travis in your prayers!!!

Here is some more info on HLHS:

http://hlhsinfo.homestead.com/index.html

Nicole & Roger

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Travis Gary DiCarlo

Travis Gary DiCarlo, first son of Roger and Nicole DiCarlo, was born at San Diego Kaiser Hospital, October 23, 2009 with a Congenital Heart Defect known as Hypoplastic Left Heart Syndrome, or HLHS. The short explanation is that Travis was born with only half of a heart. In order for him to live, a series of three operations were planned.

Due to an infection, Travis had to have an additional open heart surgery to insert pulmonary artery bands on October 29, 2009. He had his Norwood Surgery on November 21, 2009. He was sent home on December 14, 2009 from Rady's Children Hospital of San Diego after spending his first 52 nights of life in the hospital.

After being home for several months, Travis was due to for his next surgery in the plan, the Glenn procedure. But the life of a cardiac kid can change in an instant and life doesn't always go as planned. Due to the anatomy of his heart and some rhythm issues, Travis had what the surgeons called Norwood part 2. They replaced his Sano Shunt with a bigger one, enlarged his pulmonary arteries and installed a pacemaker. This surgery was performed on May 3, 2010. Travis went home on May 17th, 2010.

Around Travis' first birthday in October his cardiologist detected some narrowing in his pulmonary artery and ordered a heart cath. The heart cath showed extensive narrowing in his aorta and his pulmonary artery. On February 17, 2011 Travis had his 4th open heart surgery. He was doing well with recovery until he suddenly went into cardiac arrest on Friday (2/18). After two hours of CPR Travis was placed on ECMO (a heart/lung bypass). Although his heart did begin to beat again on its own, his brain was damaged during the whole ordeal and he lost all brain function. We had to say goodbye to our beautiful boy on Saturday, February 19th. We miss our boy terribly.....