Let me set a scene…
You have an illness, you were born with it. You have suffered agonizing surgeries, agonized with the reality that your illness makes you different from everyone else, had multiple scares, suffer anxiety, depression, fear, worry, and you know that there is no cure. You have been cared for by excellent doctors who put your care first, they know you inside and out (literally). They do special little things to help make things a little bit easier as the years pass by. Making the small things matter, making a smile the most precious gift you can receive some days.
Then, you grow up. You find yourself an ‘adult’ and you are thrust outofthe world of pediatric medicine at a mere 18 years old. Too young to fully understand all that that entails. You know you need to go to a doctor for regular checkups, but you are scared, unsure, maybe even unaware of the implications of not going because you are still young enough to believe that you are invincible.
Maybe you do go to regular checkups, but your doctor isn’t a specialist in your illness, they don’t understand all the facets of how your illness affects you, you fall through the cracks and you find yourself suddenly at risk of a very early death as a result. Perhaps they give you medicine for your illness, but you don’t have insurance to pay for it because this is a per-existing condition. Where once you had a medical team who took care of you, who educated you every step of the way, you now find yourself alone, trying to educate your new medical team and where fear once lived it now thrives.
This is the state of the adult care for congenital heart defect survivors.
I have been working with Joshua’s surgeon and the sick kids foundation to make a mutual dream a reality. I wrote the following essay/article to help on this new ground breaking project that could change lives and the medical system forever.
In the following weeks I will share more about how you can help, what you can do, how you can become a part of this new and exciting adventure. Please, if you share this, with as many people as possible then together we can make history and save lives.
There’s a killer stalking my child. And almost 200,000 other mothers know the same fear. This killer gives no thought to race, gender, sexual preference, religion or politics; it comes swiftly and sometimes silently and once it grabs hold of you it will never let you go.
The killer is Congenial Heart Defects (CHD) and it kills more children annually than all childhood cancers combined. It is estimated that one out of one hundred children born in Canada will be born with some form of CHD.
In the 1950’s and 60’s a child born with a congenital heart defect had a twenty percent chance of surviving to adulthood. Fortunately, today, ninety to ninety-five percent of children born with a CHD survive. The growing number of survivors is leaving us with a beautiful yet unique problem. Where we have never before needed an adult care system, we now have a desperate and constantly growing need for specialized cardiologists in the field of Congenital Heart Defects.
“It is important for cardiologists to specialize because heart defects are many, varied, and complex and they are not the same as cardiovascular disease. A heart defect is not the same as a plaque build up in the artery and all that that entails, however complex. Until recently, there weren’t enough survivors to justify a specialty, nor was there enough interest,” says Shelagh Ross , President of Canadian Congenital Heart Alliance
My son Joshua is one of these survivors. He was born in 2008 with a complex congenital heart defect; we were told not to expect him to live. Today he is six years old, has had four open heart surgeries, four cardiac catheterizations and suffered a massive stroke, yet he is here, and alive because of a medical research and a pediatric system that has changed how it thinks about patients and patient care. This is a staggering success for the field of pediatric cardiology, yet there are systemic problems that result from the dramatic increases in the survival rates of our CHD kids.
When Joshua turns 18 he will leave the safety of his pediatric hospital and enter an unknown adult world of medicine that is not ready for him. He will leave Sick Kids in Toronto and be met with new doctors who may not be specialists in the world of congenital heart defects. As a parent I have learned a great deal about the medical system from pre-natal, through the pediatrics and now realize what the adult care system is currently facing in terms of larger numbers of survivors, a lack of specialized doctors and health care providers.
But what would happen if there were a place where adult CHD patients could all be treated with equal care, equal value–just one all encompassing system such as they already receive as kids? What would happen if we had a place for all CHD patients—baby, child or adult? What would happen if we went to one place for prenatal care, pediatric care and then adult care? What if Josh, who has always been followed by one specialized cardiologist, whose surgeries were always done by the same surgeon, was followed throughout his life by the same institute, the same care providers?
This is a dream that could become reality!
I see all the problems that face Josh and survivors like him, I see the lack of specialists in this field, I see the lack of education for the patients leaving pediatrics, I see the cracks in the system that are just waiting for kids like Joshua to fall through and I see a deep need for change. As a parent it is my job to take care of my son, to help him in any way that I can. I cannot cure my son, I can’t fix his broken heart, but I can do everything in my power to see that his future is as secure as possible. I can make sure I tell everyone who will listen about this silent killer who stalks our kids. I can do whatever is necessary to see a place like this dream institute become a reality.
This is not so far fetched a dream. It only needs an action plan. It needs people like you, people with a voice, people who care about the future of our children, people with the power and will to make things happen, to ensure change.
Congenital Heart Defects are not like Cancer.
There is no cure for CHD. You can’t outgrow it. It doesn’t just go away with time. A child born with a complex heart defect will need lifelong care and probably numerous surgeries. An Institute that specializes in their health care would ensure higher success rates, and ultimately less money for the government. If all care is under one roof, then you have two less roofs to maintain. There are only 15 specialized heart centres in Canada, and with 180,000 CHD survivors, now and growing annually, this is the time to move from talking about change, to taking action towards change.