We Need to Do Better.

Now more than ever, they need our help.

May 1, 2020 4:06:45 PM / by Carolyn Salvador

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You have probably heard the expression “medicine is not an exact science” and not considered what they meant until faced with a severe illness or a crisis like COVID-19.  Today, we sit by and watch top doctors and researchers scramble for cures, treatments, and adequate testing to help put society back on its proverbial feet.  The headlines adequately reflect the adage as we read about flawed antibody tests and false-negative COVID tests, which taint our understanding of the epidemic.  Research is seldom a linear process, nor is the practice of medicine.  Our bodies are composed of interdependent systems with complex structures rooted in our DNA and genotypes.

Science is evolving as researchers make discoveries, and the practice of medicine translates to patient care.  A priority for Enduring Hearts is targeted research centered on finding better, more accurate methods of detecting organ rejection. Like the COVID19 testing we are reading about in the news, the current standards for identifying organ rejection are flawed, and the outcomes for patients can be life-threatening.

For physicians today, a heart biopsy is considered the “gold-standard”  for determining how well a child’s body has adapted to their new heart.  A heart biopsy measures and grades the level of organ rejection and is invasive, requiring sedation, catheterization, and the removal of a piece of the child’s heart for analysis.  During the first year post-transplantation, children can endure up to 10+ of these procedures.  Each time a doctor believes that a patient may be exhibiting outward signs of rejection (which can mimic the stomach flu or a common cold), they must decide to conduct a biopsy, which is not a small undertaking.

This procedure is far from perfect, returning false negatives and scoring variances based upon operator biases.  Research is underway to develop less -invasive methods to detect rejection, using blood biomarkers and image analysis that could pave the way for early detection of organ rejection resulting in saved lives. By doing so, we believe that this science can help to reduce the probability of error and lead to better outcomes.  Enduring Hearts has funded multiple studies focused on this crucial area using a variety of approaches, including the role of T-cells, microRNAs, Cell-free DNA, Echocardiograph, and cardiac MRI imaging, just to name a few.

The race is on for discoveries that pave the way for better patient care. We need to do better for children living with a transplanted heart. A heart biopsy is not an exact science, and their future is counting on it.

Enduring Hearts Board Secretary Kelley Gray has shared her son Everett’s heart journey.  The family spoke at our gala on 2/28/19.  One week later, Everett was in the hospital with acute organ rejection.  His biopsy was negative.

Tags: HEART TRANSPLANT, CONGENITAL HEART DEFECT, TRANSPLANTATION, HEART TRANSPLANTATION, PEDIATRIC HEART TRANSPLANTATION, DONATION, ENDURING HEARTS, PEDIATRIC HEART TRANSPLANT, CHD, CHARITY, NONPROFIT, NEWHEART, NEW HEART, TRANSPLANT, ORGAN REJECTION, TRANSPLANT ORGAN REJECTION, pediatric transplant week, COVID19, coronavirus

Carolyn Salvador

Written by Carolyn Salvador