On February 15th, 2019, a spunky boy was born named Bryson. He was born at 35 weeks and 4 days due to a placental abruption that caused both Bryson and his mom to lose an abundance amount of blood. Bryson was immediately taken to the NICU where he stayed for ten days. On February 18th, 2019, Bryson had his first echocardiogram performed. An echocardiogram is an ultrasound of the heart. This test was ordered by the neonatologist after hearing a loud murmur on their exam. This first echocardiogram showed that Bryson had numerous small holes between his ventricles. The pediatric cardiologist told us that these tiny, intramuscular ventricular septal defect, can be normal when born prematurely but were expected to close by six months to twelve months of age. Bryson was discharged from the NICU on February 25th, 2019, and had an outpatient follow up with cardiology for March of 2019.

       On June 17th, 2019, Bryson had another cardiology appointment where he had another echocardiogram to assess these holes within his heart. At this appointment, the cardiologist informed Bryson’s parents that the holes were finally closed, but that his atrium looked “abnormal” and would like to follow up in six months. On December 17th, 2019, Bryson returned to the cardiologist for another echocardiogram. This was the day that turned Bryson’s parents’ world upside down. This was the day that Bryson was diagnosed with Non-obstructive Hypertrophic Cardiomyopathy.

      Hypertrophic Cardiomyopathy is a rare disease, especially in childhood. This disease causes abnormal thickening of the walls within the heart, typically the left ventricle and tends to be asymmetrical. Over time this thickened muscle becomes stiff and can impede the amount of blood taken in and pumped out to the body. Hypertrophic cardiomyopathy is the most common cause for sudden cardiac death in people under the age of 30.

     After receiving this diagnosis, Bryson’s parents reached out to a clinic that specialized in this form of cardiomyopathy and made their first appointment for Christmas Eve of 2019. At this appointment, Bryson’s disease was confirmed and his parents were told that he was “stable” for the meantime and the clinic would continue to monitor him monthly. The doctors also informed the parents that, statistically, the younger the kid is at time of diagnosis raises the chance for need of transplant due to the complications this disease can cause.

     Bryson continued to do fairly well from a cardiac standpoint until October of 2020. At one of his routine echocardiograms, they noticed that his left atrium had become very enlarged in a short amount of time. The doctors explained that this is not a consistent finding with Hypertrophic Cardiomyopathy, but more so suggested that he may be developing a secondary form of cardiomyopathy, as well. The doctors and Bryson’s parents agreed to continue to just watch closely over the next couple months.

     In April of 2021, Bryson’s parents noticed a severe increase in the amount of sweating that Bryson was having with minimal activity. This was a very concerning sign for his cardiac team, so the decision was made that it was time to perform a more invasive diagnostic test known as a heart catheterization. Echocardiograms can only supply a limited amount of data via ultrasound technology. A heart catheterization uses a catheter that is threaded through an artery to the heart to measure the pressures within each area of the heart. This procedure would give the doctors a better look at what was happening within Bryson’s little heart. Before this procedure was performed, the parents were informed that if they found the pressures to be too high, that he would need to be admitted to be listed for transplant. They explained to the parents that as the pressures raise within the heart, the risk for arrhythmias and sudden cardiac death raise significantly. The other complication from having elevated pressures this young is that the blood backing up can affect and eventually ruin the lungs. If this got too severe, he would need a heart and lung transplant or would not be a candidate at all for any life-saving procedure or surgery.

    On May 11th, 2021, Bryson was taking for his very first heart catheterization. Bryson’s parents received the news from the doctor after the catheterization that Bryson had very severe Restrictive Cardiomyopathy on top of his moderate Hypertrophic Cardiomyopathy. Restrictive Cardiomyopathy causes the heart to become very rigid and stiff, which does not allow the heart to relax normally and refill with blood. This then causes blood to back up into the atrium and then into the lungs as it progresses. The prognosis for this disease is 50% at two years after diagnosis. When children are diagnosed with restrictive, they are immediately listed for a heart transplant. The rationale for this is to preserve the lungs before too much damage is caused. It is also because the heart can only sustain such a high pressure before the heart can no longer contract normally, hence the cause for arrhythmias and cardiac deaths.

    Bryson was listed as 1A status on May 13th, 2021, through United Network for Organ Sharing, which places him as a priority status. Being 1A status, Bryson has to stay inpatient and be monitored closely until a heart match is identified. With this, Bryson’s mother took a leave of absence from her job as a Neonatal Intensive Care Nurse to relocate with Bryson to care for him during his wait. Bryson’s father comes to visit every other weekend as he has to stay home to work full time and maintain the health insurance for Bryson. The hospital Bryson is inpatient at is 4.5 hours away from their home.

     After waiting seven months for a transplant, this family has realized just how costly it is to be so far away from their hometown. This caused a loss of income from Bryson’s mom that helps pay for monthly bills such as mortgage, electric, groceries, etc. Coronavirus also complicates things. Due to COVID, when Bryson’s father visits they have to get a hotel room for those nights since only one visitor is allowed overnight. The hospital only provides food for Bryson, so Bryson’s mom has to buy food throughout the day for herself. As well as the gas for Bryson’s father to be able to visit with his son.

    With that being said, this transplant journey has become very expensive. Any money raised or donated to COTA in honor of Bryson will assist with any of the costs that are transplant-related. All donations are very appreciated. The family is super grateful for the assistance in this time of need.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.