I have decided to run in the Naperville Women's Half Marathan on April 22nd, along with the rest of Team Rylan to raise awareness and money for the Children's Cardiomyopathy Foundation in honor of my son, Rylan Lombardo. Born on October 24, 2013, Rylan was diagnosed at 5 weeks old with chronic heart disease, known as Hypertrophic Cardiomyopathy.
Cardiomyopathy is a chronic and sometimes progressive disease in which the heart muscle (myocardium), is abnormally enlarged, thickened and/or stiffened. Pediatric cardiomyopathy is one of the most serious heart conditions affecting children and the leading cause for heart transplants and sudden cardiac arrest in the young. Approximately 30,000 children in the US are diagnosed with some form of cardiomyopathy.
We are blessed that our pediatrician detected Rylan’s heart murmur when he was 2 weeks old. But as parents we weren’t overly concerned as infant heart murmurs are relatively common. Three weeks after the pediatrician heard Rylan's murmur, on December 2nd, 2013, Rylan had an ECHOCARDIOGRAM and on that day our lives changed forever. We were told that Ry’s heart was working harder than it should and we needed to take him to the ICU at Edward Hospital. Upon our arrival at the ER, we were told that Ry, who was just five weeks old, had Hypertrophic Cardiomyopathy. We could barely pronounce this new diagnosis, let alone know what it would mean for our little Ry. Hannah, our now eight year old daughter and Ry's big sister, who was four years old at the time, said that our little Ry guy had a “heart-mergency.”
The pediatrician and cardiologist thought it best that Rylan be transported to Lurie Children’s Hospital in Chicago. At this news, I totally lost it …my baby was perfectly fine this morning and now he was being transported to Lurie’s where only the sickest children go. Our minds raced with questions and uncertainties. Was he going to live through the night? Did he need a heart transplant? I just couldn’t keep my tear-filled eyes off my baby as I rode by his side in the ambulance. He looked so sick and frail just lying there in the ambulance.
Ry spent 10 days at Lurie’s in the Cardiac Care Unit. We would get to the hospital early in the morning and stay late at night, sleeping at the close by Ronald McDonald House. There were endless medical tests, meetings with doctors, nurses, and social workers. Each day was long and draining as we learned more about this horrible disease and realized the severity of Rylan’s HCM. Rylan was closely monitored while they put him on a beta blocker (propranolol), which he still takes today. The beta blocker slows his heart rate down, so his heart doesn’t have to work so hard, in hopes the disease doesn’t progress, as there is no cure or surgery that can be done to fix his sick heart.
HCM is the thickening of the left ventricular wall of the heart, which restricts the flow of blood to the body. The doctors tell us that Ry’s case is very severe. He, also, has an obstruction between his aorta and the ventricle, which is what caused the murmur his pediatrician heard. Today, Ry is seen a few times a year, with repeat echocardiograms, ECGs and yearly holter monitors. Each time we go into Lurie’s cardiology clinic, the initial shock and memories flood back from that first night when he was diagnosed. Each time, we anxiously await the test results. We have been blessed that Ry's heart has remained stable and not worsened in the last four years.
From looking at Ry’s smiling face, you wouldn't know there is anything wrong with his little heart. Many kids who suffer from HCM do not even know they have the disease until it’s too late. When you hear about high school and college athletes that drop dead playing basketball, football, etc., they most likely had undiagnosed HCM and went into sudden cardiac arrest, as often there are no symptoms. So, most likely Ry won’t play competitive sports, but today he runs around like any other four year old boy. Ry currently takes propranonol three times a day to improve the functioning of his heart and has a portable AED machine with him at all times should his heart stop and an electrical shock would be needed to restart his heart. He will probably be on a beta blocker his whole life and will most likely have an ICD surgically implanted as he gets older, unless a cure is found. He will continue to have regular visits to and monitoring by his cardiologist on the heart transplant/failure team at Lurie's.
We couldn't be more blessed for Ry's smiles that brighten our lives each day. While none of us knows what the future holds, we just hope and pray that the disease doesn’t progress for Rylan and they find a cure one day. Pediatric cardiomyopathy is the leading cause of heart transplants and sudden cardiac arrest for children 18 years old and younger and deserves the funding to help save the lives of those who lose their life too young! This is the reason why Team Rylan has decided to run in the Naperville Women's Half Marathon, in Rylan’s honor, to give something back to the Children's Cardiomyopathy Foundation (CCF), an organization dedicated to search for cures while improving diagnosis, treatment and quality of life for children affected by cardiomyopathy. Thanks so much for reading Rylan's story and helping Team Rylan raise money and awareness for Pediatric Cardiomyopathy and the CCF!!! For more information on Pediatric Cardiomyopathy, please visit the CCF website at www.childrenscardiomyopathy.org.