Meet Robert Pio Hajjar
Most weekday mornings you’ll find Robert Pio Hajjar and his dad Elias doing laps at the Canada Games Aquatics Centre in London.
When Robert was only two days old, doctors at the Mississauga hospital where he was born told his parents that he would never talk, he would never walk.
They could not have been more wrong.
Not only does Robert talk – his motivational speeches across North America have inspired over half a million people – but he walks, indeed dances, to his heart’s content.
Robert was born with Down syndrome in 1977 and had health issues early on in his life.
“He had a lot of gastrointestinal issues as a baby, as well as pneumonia, and one doctor told us that Robert had an atrial septal defect,” says Jan Hajjar, Robert’s mom.
Congenital heart disease, which affects about one in 100 people, is more common in people with Down syndrome. Often it is in the form of an atrial or ventricular septal defect, which is commonly referred to as a hole in the heart.
Robert was also diagnosed with a heart murmur as a baby, but over his childhood both conditions seemed to resolve themselves as he grew. However, as a young adult, Robert began fainting. It was on and off, and as an adult the family found themselves calling an ambulance or taking their son to the local emergency department.
Robert was diagnosed with vasovagal syncope, a condition which causes his heart rate and blood pressure to drop suddenly. That leads to reduced blood flow to the brain, causing him to briefly lose consciousness.
For Robert, who already has low blood pressure, this means a determined effort to keep well hydrated, increase his daily salt intake, especially when he is feeling faint, and annual monitoring by a specialist.
When the family moved to London about 10 years ago, their family physician referred Robert to Dr. Lynn Bergin, Cardiologist and Director of the Adult Congenital Heart Disease Clinic at LHSC.
Robert comes in once a year and spends two hours in the clinic with the congenital heart disease team, where he receives tests such as an electrocardiogram (ECG) and an echocardiogram, done by cardiac sonographers specialized in congenital heart imaging.
Some patients periodically need other tests such as cardiac MRI, cardiac CT scan or cardiopulmonary stress testing.
After testing, patients receive an initial nursing assessment followed by a comprehensive examination and review by one of the adult congenital cardiologists, the adult congenital nurse practitioner and often a senior cardiology subspecialty trainee.
Other cardiac specialists as well as a social worker and genetic counsellor are also available for patients as needed.
Members of the Adult Congenital Heart Disease Clinic at LHSC, including Dr. Lynn Bergin, front right, Cardiologist and Director of the Adult Congenital Heart Disease Clinic.
“We provide a comprehensive approach to our patients’ heart health. We work at empowering our patients to understand their heart diagnosis and possible complications so they can advocate for themselves. Our patients understand that they need life-long follow-up for problems which may develop as a result of their initial congenital defect or in the long term due to the previous surgical repair,” says Dr. Bergin.
As well, patients may develop other common age-related heart problems such as coronary artery disease in addition to their congenital heart disease. For this reason, the clinic emphasizes good preventative heart health care such as regular dental checks, annual flu shots, and other heart-healthy behaviours like exercise. For women of child-bearing age, the clinic also talks with patients about pregnancy risks.
“We look at the whole person, physical and emotional. Many of our patients have challenges with mental health such as depression and anxiety. For some patients, because they had surgeries as a child there may be fear associated with having medical tests and appointments along with uncertainty about life expectancy and quality of life,” says Dr. Bergin.
Years ago, the prognosis for children with congenital heart disease was poor, with only 20 per cent of children with congenital heart disease surviving childhood. That has changed.
“Worldwide, there are now more adults with congenital heart disease than children because these patients are living well into adulthood due to excellent care and innovative surgical and interventional procedures,” says Dr. Bergin.
In 2019, 90 per cent of children with congenital heart disease will survive to adulthood and there are now an estimated 250,000 Canadians living with congenital heart disease.
Since problems can develop with the initial repairs, almost every congenital heart repair needs to be followed over a lifetime.
“Some patients were told, ‘you’re fine, you’re fixed,’ but they can develop a problem with the repair,” says Dr. Bergin. “In our specialized clinic we can anticipate their specific problems and prevent further damage to their heart.”
Robert, who did not have heart surgery as a child, credits the clinic for his health and his future. His dad, Elias, says, “I lift my chapeau for everyone who works at the clinic, the physicians, the nurses, the technicians, everyone there.”
A role model for heart-healthy living, Robert swims most mornings with his dad, which keeps him in training for Special Olympics, where he has won gold. He also plays basketball, baseball, bowling, bocce and other sports.
His mom also credits a healthy diet – Robert preferred broccoli to chocolate as a child –for his health.
“Every day I wake up and I look out the window, and say ‘I love my life,’” says Robert.
Dr. Bergin explains that she and her team feel enriched being able to provide care for Robert.
“Robert is not defined by his disease, he has taken charge of his life and happiness. He has not only overcome but embraced his diagnosis which hasn’t limited him mentally or physically. He lives enthusiastically within the boundaries of his underlying condition,” says Dr. Bergin. “He does amazing things with a very positive attitude and inspires others.”
The strength of his family, their ability to teach him and guide him, and Robert’s own perseverance and positive outlook has made such a difference in his and their lives.
As his mom says, “We never dwelt on what Robert could or could not do. We didn’t allow his disability to decree his fate.”
“When it was suggested that we give up our baby, we vowed to give him the best life possible. We would have missed the most wonderful, loving child and beautiful soul.”
And he has inspired the lives of so many others through his speaking engagements, charity and positive outlook on life.
“When I was two days old my parents were told to put me away and forget about me,” says Robert. “I thank my parents every day they didn’t listen to the doctors.”