It’s nothing more than a muscle, a small part of your makeup which beats in rhythm to sustain life. Yet it holds so much significance, not just in its ability to exist at the core of your body, but at the very center of your being. Its physical importance can’t be denied, but it’s the light which emanates from that core that gives life meaning.
The Sunday Series (24): Heartlight
You could literally see his heart beating. Hayden lay there, his chest wide open, covered only with some light bandages, in critical condition. His parents sitting by his bedside throughout the night, with one single purpose, one single desire, one single prayer… please let Hayden live.
It was only a little more than four years before that moment Hayden Lazorchak was born, prematurely. But at 4-lbs, 12-ounces, he was a seemingly healthy preemie, at least for a day. That’s when doctors in the NICU discovered something was missing – half his heart. Hayden’s issue was never caught in-utero. An ultrasound about halfway through the pregnancy showed all four chambers. But somewhere between that midpoint and his birth about a month earlier than normal, something failed to develop, and within 24 hours of his entry into this world the doctors knew Hayden would embark on a rare journey, one shrouded in a dark cloud of doubt that it could even succeed.
It’s called Hypoplastic Left Heart Syndrome. HLHS is a rare congenital heart defect in which the left ventricle of the heart is severely underdeveloped, basically the person has only half a functioning heart. In babies with HLHS, the aorta and left ventricle are underdeveloped before birth, and the aortic and mitral valves are too small to allow sufficient blood flow. For Hayden doctors said his best chance at survival would be three corrective surgeries, the first to begin immediately, the second at six months, the third a few years down the road. That’s the medical game plan. The reality is no one could be sure it would work, but there was little choice.
So having entered the world only hours before, Hayden was about to undergo major open heart surgery. His parents, Ali and Rob were given time with their newborn son, to hold him, to take photos, to be in the moment, because at that moment, the doctors were unsure Hayden would even make it.
But somehow he did.
The first emergency surgery was deemed a success. Though Hayden spent a month in the hospital, he was then allowed to come home.
Ali says the challenge of taking care of a new life, even a “normal” baby, can be overwhelming, but add to that the task of caring for a baby having undergone open heart surgery and the real challenge becomes creating as normal an existence as possible, especially when you know what is looming around the corner, surgery number two.
Ali says the first surgery was a “whirlwind”, an immediate and necessary emergency procedure just to keep Hayden alive. But the second time around, Hayden was already six-months old, “we knew him”, says Ali, “this one was going to be so much harder.”
And it was.
Hayden was supposed to be in the hospital for a week, his stay lasted four months. During that time, and through a myriad of complications, Hayden suffered…including becoming addicted to pain killers. This tiny life, a little more than half-a-year old, was now an addict, forced to be put on methadone to help ween him off the pain drugs which the doctors were forced to give Hayden just to help him exist. He had also been intubated for so long now, Hayden didn’t even know how to eat on his own anymore. Physical and drug rehabilitation now became a part of this tiny baby’s existence.
They say God does not give you more than you can handle. Sometimes that is hard to believe. During the same period, Ali was forced to undergo an emergency open appendectomy, after her appendix ruptured when she and Rob were out one evening. Ali says for her family, especially for Rob, with his son suffering, his wife recovering from her own major surgery, it seemed like the world was teetering on the brink. But Ali recovered and then Hayden, still less than one-year-old, having survived his second surgery and his “rehabilitation”, eventually came home.
Except for the medications Hayden needed to take daily, Ali says life was, “really normal. We did everything normal families do.” They did, but the Lazorchak’s were doing even more. During Hayden’s second surgery stay, Ali and Rob decided they needed to give back and created a non-profit organization called Hayden’s Heart Heroes, with funds raised going directly to the pediatric cardiology division and the PICU at Johns Hopkins Hospital, where Hayden was being treated. Ali says when you are going through something like this there are “two roads to take. Get through it and then try to forget it, or so something about it. For us it was about doing and emotionally that’s where we were able to put our energy, it gave us direction.” (http://www.haydensheartheroes.com/)
For the next few years, the direction for the Lazorchak family was a positive one. Outside of the visits with their cardiologist Dr. Joel Brenner, and the daily medications, Hayden was living and growing just like a normal child. Ali says from the outside it was impossible to tell he had been through so much. That’s what made surgery number three, the final one the doctors told them about shortly after Hayden was born, so tough to take. “It was horrible for us”, says Ali, “unbelievably difficult because he was totally this little person. You already have all these connections. He loved to sing, loved to golf, it was so much different than when he was a baby, at four-years-old, it was so much more real and it was very hard to hand him over that day.”
Hard quickly became an understatement. The prior surgeries had not been easy, this one ended up requiring a heart-lung bypass and the discovery of a tricuspid valve leakage. On the surgery table for ten hours, the doctors would come out to give updates to Ali and Rob, and none of them were positive. The doctors believed by that evening Hayden might need to go on full life support. Coming out of surgery that day Hayden’s chest remained opened because of a build-up of fluid, the doctors pumped him with diuretics for three full days. The rabbi who came to see Hayden nearly fainted when he saw the young boy lying there with his chest open, his heart visibly beating.
But in nothing short of a miracle the doctors were able to stabilize the young boy. They closed him up and after overcoming a few more complications, discussion of a heart transplant which Ali and Rob somehow convinced the doctors would not be needed, and more than a month in the hospital, Hayden finally came home.
Hayden is now 9-years old and slowly over these past five years his heart function has steadily improved, his valve leakage is no longer an issue and doctors say his heart is the best its ever been. Hayden takes a daily dose of the blood thinner Cumadin, which he will do for the rest of his life, but Ali says to him all of this is normal. She and Rob have fought hard to make life normal for Hayden and for them and to continue to give back. Hayden’s Heart Heroes will hold its 9th golf tournament this June and the book fair this fall, and the foundation is about to hit the $100,000 mark in donations.
In the end it’s all about heart. Whether it’s a half, a whole, or something in between. It’s not the heart muscle, but the light which emanates from its core, and touches all those who come in contact. For Ali and Rob it’s the glow of that light, Hayden’s light, now stronger than ever, which makes their own hearts shine ever brighter.
Until next time thanks for taking the time,
Mark Brodinsky, Author, Blogger
It Takes 2. Surviving Breast Cancer: A Spouse’s Story
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