Xavier Thomas Ross of Newtown, PA was born at 8:04 pm on Saturday, May 28, 2011 to a team of doctors, nurses and heart specialist at Children’s Hospital of Philadelphia (CHoP). Eighteen weeks earlier, he was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). HLHS is a severe congenital heart defect where the left side of the heart is undeveloped and unusable. The job of the left side of the heart is to pump oxinated blood into the aorta and then to the body. At just 4 days old, Xavier went into the OR to have his first open heart surgery. His chest was opened and he was put on bypass. The doctors inserted a BP shunt which allowed his heart to get blood to the body. This shunt was only a temporary fix until he got bigger and stronger. Xavier was in the hospital until June 21st, 2011.
Xavier did well at home and was only admitted to the hospital once that summer for a blood transfusion. It was soon time for his second stage of his heart repair, The Glen. We were admitted on Wednesday, October 12th and he had his second open heart surgery on Thursday, October 13th. He again needed to be put on bypass.
He did great and was home in 8 days!!! Xavier is thriving and amazing us every day. He is currently awaiting his third and hopefully final open heart surgery sometime between the age of two and four. He is a fighter and a warrior and we fight right along side him. Due to his heart, he can’t attend daycare, so his mommy left her job as a teacher to stay home and take care of him. Xavier’s daddy works two jobs, but none that provide insurance. All donations will go to help the family pay for the private insurance that they’ve had to purchase to cover Xavier’s care. Donations will also help the family pay for co-pays, medicines, and home health care equipment that are not covered by their insurance.
APRIL 29th, 2013
As a family we were shocked when we got the news that Xavier is going to need an extra surgery. We were most definitely not expecting it. He will be going to CHOP sometime in the next two to four weeks to have his tricuspid valve repaired. He will be in the hospital for at least 7-10 days. Which means that my husband and I will be living in the hospital with him. We have faith in God and in our team of surgeons, cardiologist, neurologists, hematologist, and cardiac nurses. We know that this repair in essential for Xavier to live a long, happy life. Following this procedure, he will have one more expected surgery, the stage three fontan. That will most likely take place next summer. As a family we struggle to keep all the balls in the air. We are blessed to have a supportive heart community, a strong extended family and dear friends who help us every step of the way. We are honored and extremely blessed to be a part of Steps Together.
APRIL 30, 2014
Xavier will be headed back to CHOP on June 2nd for a cardiac catherization. This will be done in order to get information and pressures for his next surgery and also they will most likely have to coil some collaterals that have grown back. Please keep him in your prayers. Xavier will then under go another open heart surgery, the Fontan procedure, late this summer. Xavier’s wish list for his hospital stay can be found by clicking here.
FEBRUARY 17th, 2015
An update via Hayden’s Heart…. (Scroll down for more information about this organization)
Almost 5 months ago Xavier Ross went into CHOP for his Fontan, the third and often final open heart surgery to repair a Hypoplastic Left Heart. Typically with this surgery, the family prepares to be in the hospital for a week- and in some cases a month- while their child recovers, drains off extra fluid-etc. But while our buddy and warrior Xavier was recovering, something tragic happened. Something so rare that people who have been in the field for 15+ years have never even seen. Xavier’s stitch from his Fontan burst and sent him into immediate cardiac arrest, internally bleeding (which led to externally bleeding) everywhere. A miracle happened that day when his surgeon was just a few feet away and was able to stitch his heart back up and save his life right there in his bed in the CICU. But there was of course damage that had already been done. Xavier’s brain had already lost oxygen and his body went through such trauma that he is still, 5 months later, recovering on that same CICU floor. They are working hard on getting Xavier over to the rehabilitation side of CHOP and hope that transfer happens in the next month. But nothing is definite. Once there, it is projected that he will need 4-6 months in rehab- again nothing is definite. What is known is this Fontan- this possible at most month stay in the hospital that they initially prepared for has- in literally the blink of an eye- turned into what may be an entire year- or longer…
Jackie and Nate have been blessed with wonderful supportive parents who have eased the burden of worrying about their one year old sweet daughter Elliot. They know she is being cared for and loved on in their absence. They are able to take turns at the hospital- making sure Xavier is not left alone- and every day one of them tries to be home for a little bit to be with Elliot too. Their lives, like all of us, revolve around the well being of their children. Unfortunately, the stress of money has again taken its toll on them and simple things like gas to and from CHOP, diapers for Elliott, groceries, etc are becoming a burden and a stress that is just not needed right now.