Support Charlie's Fight Against Restrictive Cardiomyopathy

Charlie, age 2, has Restrictive Cardiomyopathy (RCM), a type of heart disease which only affects 5% of all cardiomyopathy patients. Restrictive cardiomyopathy causes the left and right ventricle to become stiff and unable to adequately pass blood through his body.

This disease wasn’t caught until August 11, 2024, when Charlie showed severe symptoms including breathing problems, swelling, lack of circulation, fatigue, cough, loss of appetite, bulging neck veins, and weakness. Because of the severity of the RCM disease and the cardiac and pulmonary pressures in Charlie, he was placed on the United Network of Organ Sharing (UNOS) heart transplant list with the highest level at 1A.

RCM is not curable and most patients have 2 options, heart transplant or death. This is because of the nature of restrictive cardiomyopathy in that once the heart is stiff, it cannot soften again and it will continue to push less and less blood through the body leading to growth issues, other organ failure, and eventually death. The stiffness of the lower heart also creates a build up of pressure in the upper heart, which balloons out and can add pressure to other directly attached organs like the lungs.

Charlie’s cardiac catheterization test results showed Charlie’s heart pressures are very high and this pressure is directly impacting his lungs causing pulmonary hypertension (high pressure in his lungs), which ultimately leads to irreversible lung damage. Charlie was put on the highest level of the United Network of Organ Sharing (UNOS) heart transplant waitlist called 1A due to the high pressure on his heart and lungs, which ultimately could lead to a heart and lung transplant. The goal is to get the heart transplant before the current RCM heart causes too much damage to his lungs which would lead to a lung transplant as well. A heart and lung transplant is much more difficult and much higher risk than just a heart transplant and would require finding a suitable donor with both available.

Charlie is running out of time. Currently, we are in a fight with Charlie’s current heart to keep fluids off of his body and to get food into his stomach. These fluids come from his straining heart and negatively affect all of Charlie’s other functions and his ability to gain strength for any future procedures. This includes his stomach, which isn’t getting enough blood to process foods and causes him nausea and constipation, ultimately preventing him from eating more. At this point, doctors are hoping and questioning if Charlie’s stomach will even be able to process nutrients from a feeding tube, which may be one of his last options for sustenance to grow.

Charlie’s current heart is failing and may not last long enough for the heart transplant, which based on his weight, age, blood type (O), and 1A status on the UNOS heart transplant waitlist is 6 months to 1 year on average.

Charlie is also suffering mentally from delirium due to his extended stay in the CICU (cardiac intensive care unit) which exacerbates things and makes life a lot harder, more confusing, and scarier for the poor guy. The next steps are to stabilize him and his fluids using diuretics, help his delirium via daily schedules and outdoor exposure, help him gain strength via nutrition, sleep, and growth, and pray that his current heart can hold on until he is nutritionally and physically strong enough to use a VAD (Ventricular Assist Device) or a BiVAD (two Ventricular Assist Devices, fully bypassing his heart) to bridge the time between now and a heart transplant.

Update 8/28/24 Charlie had a code blue while being given anesthesia for a CT scan to check the size of his chest canal and to give surgeons a better idea of how they will do the BiVAD procedure. The doctors were able to stabilize Charlie, but he is currently intubated with several different blood pressure medicines, a paralyzing and sedation agent.

Update 8/29:

Charlie is scheduled to have BiVAD surgery on 8/29 at 2:00. This device will help Charlie survive until he can receive a transplant. Please keep him in your thoughts and prayers, as well as the surgeons and medical staff involved in the surgery.

UPDATE 8/30: BiVAD surgery was successful but Charlie still has to fight to survive until he gets a new heart.