The Value and Depth of Meaningful Medical Partnerships
- Charlie's Warrior of the Angels
- 5 days ago
- 7 min read
A message of the value and depth of meaningful medical research
Having a meaningful and impactful relationship always provides a sense of value and depth that many times falls short. In the medical and philanthropic, non-profit worlds that holds true in many ways. Without out the compassion and knowledge of medical experts, such as Dr. Matthew Harting, out of UTHealth Houston, Congenital Diaphragmatic Hernia (CDH) treatment and therapies would not progress for advanced care in the future. Though sometimes small, funding from non-profits can be the change and impact that these medical partners need to keep going. Often times, it is the stories behind these organizations that drive these medical teams to success. No one can build more dedication and care for a cause than those that have been directly impacted by it. Nine years ago, I knew nothing about CDH and was naïve to the fact that my whole world was going to be flipped upside down in six months with a CDH diagnosis of my Charlie. Throughout the past seven years Charlie Polizzi’s Warrior of the Angels has built strong connections within the CDH and infant loss communities and we are not backing down. This month Dr. Matthew Harting is or guest blogger discussing just how these relationships can mold the future of CDH treatment and research.
Dr. Matthew Harting on Medical Partnerships
Standing at the bedside of a newborn baby who may not survive is a life-changing experience… for both a parent and a physician. I first had this experience as a medical student, standing at the bedside with a large team of students, trainees, and attending physicians who were all deeply dedicated to improving the life of a newborn baby who had been placed onto ECMO with a diagnosis of CDH. At the time, I knew very little. I was fascinated by the wonders of modern (it was 2001) medicine, but even more by the trust that families place in their medical teams during the most difficult moments of their lives. What an extraordinary privilege it is to be entrusted with the care of a family's most precious gift.
Twenty-five years later, the work continues. Now, following 13 years of training (and 12 as an attending surgeon-scientist), I (along with an incredible team both at my institution and at collaborating centers internationally) have the privilege of caring for patients and families facing CDH. It is remarkable to look at how far we have come (and indeed we have made remarkable strides) and yet opportunity exists every day to improve the outcomes for children and adults of all ages with CDH. While many challenges remain, every day brings new opportunities to improve outcomes for children, and increasingly adults, living with CDH. Families often ask, "What new discoveries are on the horizon?" Every two years, researchers, clinicians, and patient advocates from around the world gather to share answers to that question. Moreover, we gather to consider all the possible avenues and collaborations which may lead to breakthroughs. In April 2026, this meeting was held in Leuven, Belgium, home institution of Jan Deprest (Dr. Deprest graciously hosted an incredible meeting) who has championed fetoscopic endoluminal tracheal occlusion (FETO) – a breakthrough prenatal intervention for prenatally-diagnosed CDH - over the last 30 years. Here are some insights (many presented at that meeting) into the current state of CDH research.
First, basic science research – these are the insights into the fundamental mechanisms of disease. We (note that when I say “we”, I mean CDH investigators internationally) are learning more about the retinoic acid pathway and how it is central to the development of CDH. Insights are opening doors for prenatal and postnatal therapies targeting this pathway. Though promising, CDH is not diagnosed until it is far too late to prevent it, rendering these insights valuable for treatment, not prevention. We are learning more about how the blood vessels in the lungs malfunction. We are also using cell and sub-cellular therapies (including amniotic fluid cells and extracellular vesicles) to target the lung problems. Finally, there are new lung and disease models being used to study the tissue, cellular, and sub-cellular components of CDH. While these discoveries may seem far removed from the bedside, they provide the foundation for future therapies that could improve lung growth, reduce complications, and ultimately improve outcomes for babies with CDH.
Second, translational research – these are the things we are investigating that may be applicable to actual human disease (often based on previous basic science breakthroughs). We are learning how important the heart function, in addition to the lung blood vessels, truly is. We are evaluating treatments targeting the underlying mechanisms of cardiac dysfunction. There are several medications that target pulmonary hypertension which hold promise in CDH. Several large studies are using donated human tissue to identify cellular and genetic underpinnings and potential therapeutic targets. These studies are especially exciting because they help bridge the gap between laboratory discoveries and treatments that may eventually benefit patients and families directly.
Finally, clinical research – these are studies with human data and comparing treatment strategies which are currently being used. Collaboration between centers is the key to these discoveries – centers must work together to have the data to identify best practices, medications, and surgical approaches. AI is changing our capabilities, but this technology is useless without large, high-quality data. The CDH study group, a collaboration of over 100 centers internationally continues to gather data, adding to a dataset of over 17,000 CDH patients, and these collaborating centers are investigating many of the components of current clinical practice, including an NIH-funded study evaluating a medication commonly used in CDH, inhaled nitric oxide. Several other collaborative initiatives are also using the power of collaboration to study best clinical practices. Studies are being published evaluating the power of team-based care, optimal surgical approaches, various pharmacotherapies, extracorporeal life support management strategies and indications, along with nearly every aspect of care. Notably, the value of ongoing follow-up through adolescence and into adulthood is being widely recognized and investigations into adolescent and even adult CDH are ongoing. A dedicated adult CDH clinic, investigating chronic, ongoing health issues, along with fertility / reproductive health, now exists in Houston. For families, this means that doctors are increasingly able to learn not only which treatments work, but which treatments work best, for which patients, and at what time.
This is truly an exciting time to be part of the CDH community. Survival continues to improve, and more children than ever before are growing into adolescence and adulthood with excellent quality of life. While there is still much to learn, the progress made over the past 25 years has been extraordinary. None of it would be possible without the partnership of patients, families, researchers, and clinicians working together around the world. We know far more today than we did in 2001, and if the pace of discovery continues, the next 25 years may bring advances that today seem impossible. For families facing a diagnosis of CDH, the current state of care leaves every child with a chance to survive and thrive. As remarkable as this is, the future offers even more hope.
Matthew Harting, MD, MS, FAAP, FACS
William J Devane Distinguished Professor
Director, CDH Study Group
University of Texas McGovern Medical School and Children’s Memorial Hermann Hospital
Comprehensive Center for CDH Care
Emotional Support and Community Resources
The journey through loss and grief is never easy, but no one should walk it alone.
Charlie Polizzi's Warrior of the Angels Foundation is dedicated to raising awareness, supporting families, and funding research. At Charlie Polizzi's Warrior of the Angels, families can find resources, education, and a community that understands the heartbreak and the hope of CDH.
Additional Trusted Resources:
Past Blog Topics:
Frequently Asked Questions about Medical Partnerships
How can I support medical professionals, such as Dr. Matthew Harting
Most large hospitals will have foundations and development departments who you can contact to learn more about their programs and initiatives as well as support them monetarily.
A Final Note
Supporting those who are driven to make an impact on the future treatments and therapies for CDH is very important. Without breakthrough medical research studies, CDH will not see improvements in care for generations to come of CDH babies and survivability will remain stagnant. Year over year, decade over decade, research will guide the CDH community to profound enhancements, and we will see more babies living longer, healthier lives.
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