The story of Jasmine
Caleb Champagne
On the morning of October 27, 2016 we were scheduled to welcome our second child into the world. What was a routine c-section quickly took a devastating turn and changed the way we thought things were going to go. Our son Caleb was born and it was quickly apparent that he was having difficulties moving blood to his lungs and he was very blue at birth. The doctors soon decided he needed to be sent to Vancouver. Within 2 hours of birth he and my husband were airlifted to BC Children’s Hospital. At this point I had yet to meet my new son. Because I had just undergone major surgery I was unable to fly with my son and was sent late that evening by ambulance and it would be 15 hours before I was able to meet him. The first 24 hours Caleb seemed to just need a little assistance in the form of low flow oxygen. At about 3am on the second day of his life, Caleb went into cardiac arrest and needed 20 minutes of chest compressions resulting in him being placed on a heart and lung life support machine. Caleb’s kidneys were badly affected from the cardiac arrest, however, the rest of his organs were ok, due to the damage to his kidneys he was ineligible for a heart transplant. For the first 5 days that Caleb was on life support, his heart did not beat on its own. After 13 days on life support, we were informed that he needed to be removed from the machine due to high risk of a stroke and that he was not expected to live. The pain and agony that washed over us was numbing. We could not understand how it was that this precious little boy had been dealt this.
Caleb exceeded expectations and survived coming off of life support and even showed some significant improvements. His kidneys returned to normal function and his heart began to show little progress, it began to rock back and forth rather than do nothing at all. Caleb did however, remain on a lung support machine as his heart was not strong enough to support his lungs for breathing. Over the next few months Caleb had some significant roadblocks caused by a common cold virus, extreme swelling of the torso and head, and an infection caused by bacteria in his breathing tube. There were multiple times when we were sat down and told that he would not make it. There were times where we stood by and watched as multiple people worked in a flurry to bring him back from what seemed to be the edge. There were days when a team of 15 plus members with amazing medical reputations were stumped and puzzled as to why this was happening and what to do next. And then on November 15th, just 20 days after Caleb’s first breaths, we received a diagnosis.
Caleb was diagnosed with an extremely rare syndrome called Barth syndrome. Barth syndrome is a rare, life-threatening genetic disorder primarily affecting boys. Historically, boys with the disorder died of heart failure or infection by three years of age, but with improved diagnosis and appropriate medical treatment, the survival rate has improved greatly. However, there is currently no treatment or cure for the disease, so we must treat the individual symptoms that include dilated cardiomyopathy, an inability to fight infection, growth delay, and muscle weakness. Our family knew nothing of this syndrome before the diagnosis and none of Caleb’s doctors were familiar with the syndrome at the time.
At 3 months old, Caleb’s heart had progressed enough that he was able to breath unassisted and his breathing tube was removed. At this time he was moved from the PICU up to the cardiac ward where he stayed for 3 weeks before being discharged with a feeding tube in his nose and a line in his chest that provided his heart directly with a medication. Over the last 10 months at home, Caleb has been admitted to the hospital 3 times for common colds and infected PIC lines. He returns for monthly heart monitoring in Vancouver and has to have monthly blood work drawn where it is not uncommon for me to have to watch and hold him as nurses fudge access lines and have to re-poke him multiple times. Caleb remains on multiple medications that keep his heart stable as well as a rigid feeding regimen. He still has troubles eating food so he just recently underwent surgery to have a GTube places in his abdomen which is his sole method of nutrition. Caleb cognitively is developing beautifully however he continues to struggle to gain weight. He is small in stature and developmentally behind.
Despite the battles he has endured and the battles he will undoubtedly encounter, Caleb continues to bring light to everyone who is blessed to meet him. He is such a happy, loving one year old little boy. He is our heart hero.