As recently as the 1960s, only 20% of children with congenital heart disease (CHD) would live to see adulthood. Today, thanks to innovative breakthroughs, like those happening at the University of Ottawa Heart Institute (UOHI), many more of these patients have a 90% chance of living a full life.
Even during my own medical training, standard therapy for certain conditions was to offer palliative care and let the child die in their mother’s arms. Today, parents have surgical options for babies born with the same disease.
Although the exact causes of CHD remain a mystery, recent advancements in surgical techniques, treatments, technology, and research, over the past 20 or 30 years, are making it possible for patients, who would have previously died at a young age, to live healthy lives well into adulthood.
These patients are our daughters, sons, siblings, and grandchildren. Each day, the UOHI saves lives by translating groundbreaking research into innovative care at the bedside. Would you consider making a donation to support this work? Your gift will be a valuable investment in high-quality patient care and healthier futures for families across the region, including those who live with CHD.
As a cardiologist specializing in the care of this fascinating population, I was honoured to be recruited by the UOHI. Knowing that my patients would have access to the wide range of experts needed to run a successful adult congenital heart disease (ACHD) service, I was also drawn to the Institute’s existing connections with pediatric CHD centres in the region, offering a full spectrum of care and invaluable research opportunities.
Our team at UOHI’s ACHD Clinic specializes in the ongoing care and treatment of adult patients with congenital heart disease and is currently following roughly 2,000 patients.
As the life expectancy of CHD patients has risen, there now exists a diverse group of children and adults with unique problems, requiring specialized care. Soon we will meet a new generation of young adults at the clinic, who have benefited from lifesaving surgery, but are now living with a complex disease. Each day we learn alongside our patients, in unknown territory, striving towards bright futures and positive outcomes.
To me, what makes the UOHI different from other cardiac centres is a team approach that you can feel on every level. Decisions about a patient’s care are discussed and made collaboratively between cardiologist, surgeon, and group of specialists. This supportive network means that patients have full access to the expertise, technology, competence, and infrastructure needed to provide them the highest quality care all under one roof.
Each year, our team welcomes the transition of about 150 young CHD patients, across the region, from pediatric to adult care. This challenging process entails supporting a young adult as they move from family centred care to an independent relationship with their physician. For us, this is another excellent opportunity to conduct research while educating new patients of the ACHD clinic on health and wellness topics to support this important stage of life.
As our patient population continues to grow and age, it is crucial that we can offer them the care they will need to live a long and healthy life. With your help we can ensure funding for staff, infrastructure, and research. Funding for research will allow for the collection of data to improve knowledge of our current patient population and enable possible predictions of what their future triumphs and struggles might be.
By working with other centres, to create a nationwide registry and network, we will be able to improve ACHD care both now and in the future. For me, gratification comes from knowing that through this work, I am able make a real difference in the lives of patients both today and tomorrow.
In my role, I often think of myself as a family physician for heart issues. The lifelong relationships our team has with patients means that we get to be there when they start a family or succeed in many ways of their choosing. I also have the privilege of supporting patients during some of the most difficult conversations and journeys imaginable.
Dr. Markus Schwerzmann
Cardiologist and Lead, Adult Congenital Heart Disease Clinic
University of Ottawa Heart Institute
P.S. I wish you could meet our incredible patients. So many of them faced significant challenges as children and are now looking towards healthy adult lives. We hope you will consider making a donation, in any amount, so that they, and all patients of the UOHI, will have the same chances in life that every person deserves.
P.P.S. Click here to read Gabriella’s story and how the ACHD Team has made an impact on her life.
