My Why | Liam's Kawasaki Disease Story
Today marks 3 years, 4 months, and 13 days since the best day of my life…the day my sweet Liam Paul was born! Since then, his mere existence has both broken and restored my heart 10 times over. He is my reason for doing what I do. He is my why for everything.
When Liam was 3 months old, he contracted a very serious illness called Kawasaki Disease (KD). KD is a disorder that causes inflammation of some of the blood vessels in the body during its acute phase. If the illness is caught within the first 10 days and Intravenous Immunoglobulin (IVIG) is administered, most children go on to lead completely normal lives with no further damage. However, when the illness is not caught in a timely manner, the child can suffer severe heart damage in the form of coronary aneurysms. This happens all too often to KD kids due to misdiagnosis. This is why KD is the leading cause of acquired heart disease in children and it is the reason our sweet Liam now lives with what are referred to as “Giant Aneurysms” in his coronary arteries.
On July 31st, 2014, my 3 month old baby had a heart attack in the backseat of the car and went limp in my arms. There is no way to describe the amount of fear that coursed through me as I watched my first and only child go ashen and unresponsive right before my eyes at a gas station in our small town. I can remember each detail as if it were yesterday.
The week before this happened, Liam was hospitalized for a few days due to what they said was a bad virus. I had mentioned and asked for Kawasaki Disease to be considered multiple times (I had looked up his symptoms online), but they told me more than once that it was not KD. One doctor even dared to say he’d bet his life it was not Kawasaki (I wonder where he is now). During this 1st hospital visit, Liam’s heart was slowly being attacked and nobody knew it. We were discharged about a week and a half before the heart attack.
When we were re-admitted after Liam’s arrest and the cardiologist working with him said the words “Kawasaki Disease,” it was all I could do not to burst into tears and scream at the top of my lungs. I knew what was wrong with my baby from the beginning. If only I had pushed harder, maybe his little heart wouldn’t be where it is today.
It took me a long and arduous time to stop thinking about the details and misdiagnosis and to concentrate on going forward. I still think about it sometimes and it makes me crazy.
On the 1st of August (the next day), Liam was airlifted out of state to a hospital that could perform a HEART TRANSPLANT. Those words took a long time to really sink in. At that point, while we were still in Albuquerque, they worried his aneurysms would burst and they would have a harder time getting him where he needed to be (Denver), so the preparation and flight were very rushed. His dad rode with him in the little plane and, because only 1 passenger could ride, I drove. I drove with my nephew in the car and Liam’s Godmother who carpooled. I drove for seven long hours. It was the longest, most painful segment of time I’ve ever been away from my baby. He was sedated and intubated, so he wasn’t aware that I was gone. It was still excruciating.
Upon arrival, the doctors in Denver simply told us that a heart transplant was on the list, but not yet a requirement. First they wanted to see if they could save his own heart, which was halfway occluded with clots. A single doctor’s executive decision (after talking with us) to treat the clotting in Liam’s aneurysms aggressively saved our little guy’s heart. We will be forever grateful to him for somehow knowing exactly what to do.
Half of Liam’s heart had been occluded for two days by the time they cleared the clots. They told us the left side would likely not beat again and, although his heart would be functional, half of it would die. Once they were able to get Liam’s heart to regain blood flow by use of strong clot busting medication, it started beating once again and literally astonished doctors. His heart had kept a minimal amount of blood flowing into the blocked areas by way of alternative grown passageways in order to compensate until the main arteries were re-opened. More than one doctor told us that it was not their doing that saved him. It was God. Liam was just meant to be here.
Liam is a living breathing miracle!
It is unknown at this point whether Liam will need heart surgery or transplant in the future (some say that he will most likely need something) because his aneurysms are of the size that generally don’t heal very well, but we are of the mind that only God can make those kinds of final decisions. Plus, we know others who have giant aneurysms who have seen some pretty amazing healing that they believe is due to a natural organic lifestyle! So, obviously we have adopted that as well! Clean healing foods and products. Keeping the chemicals out of the way in order to allow the body to use its full healing power. Liam sees his KD specialist about 3 times a year up in Denver and he sees his cardiologist in NM about the same. We hope to reduce the frequency in the future. He periodically gets heart testing done to watch that his aneurysms are not getting too narrow or clotting (he takes lots of blood thinners – including injected ones – to prevent clotting) to cause a blockage again.
Currently, we are living our lives to the fullest every day in appreciation of God’s little miracle that lives with us and reminds us that anything is possible. Liam’s pure gumption at just 3 months of age gives us strength to get through ANYTHING! As long as we remain together, we can power through all of life’s obstacles!
Here’s our little hero! We enjoy him daily! He’s a pretty amazing kid if I do say so myself!