Time is running out in February, it seems that while this is supposed to be the longest of winter months in terms of feeling like it will never end; it is indeed the shortest when it all boils down to days. I have been working with dodgy internet so my posts have been few but when I see the light for internet come on I do my best to provide as much information in as little time as I have. Not easy I assure you.
Today I am going to tell you about an organization that I have talked about a few times in the last few posts. The CCHA (Canadian Congenital Heart Alliance)
was founded in 2004 by Adult survivors of CHD; after a few false starts which included the much too early death of their co-founder) they achieved their charitable status in 2006. The primary aim of the CCHA is to improve access to care and the level of care for all patients with CHD, both old and young so that they can live long and healthy lives. It began with a meeting hosted by Dr. Gary Webb, the director of the Toronto Congenital Cardiac center for adults at Toronto General Hospital. The main topic of conversation was to tell these patients about the clinic (one of the top facilities in the world) and to let them know that due to lack of funding the clinic was in danger of closing.
“He said we had to start advocating for ourselves because the government, heart and stroke, and other decision makers weren’t paying attention. That was a real wake-up call. None of us had a clue about the politics behind our doctor appointments. I am sure none of us had ever given funding, or the lack of it, a second thought. After our meeting four of us got together and the Canadian Congenital Heart Alliance was born” – Shelagh Ross – President of CCHA
Shelagh, an adult survivor of CHD left Sick Kids in 1981 and like most adults with CHD, she fell through the cracks in the system for almost 17 years, until finally at age 33 she found herself in an ambulance headed to Toronto General Hospital, she was suffering from Ventricular tachycardia (a life threatening arrhythmia) she had been seeing a cardiologist annually and every year she heard that she was ‘doing great’, but in fact her pulmonary valve was seriously leaking. She had no idea at the time that the Toronto General Clinic even existed.
The situation at the Toronto clinic has improved a lot, but there is still a long way to go before the level of adult care is on par with that of kids. That’s not to say the expertise isn’t excellent but just that there isn’t enough specialists and not enough clinics. The vast majority of adult patients are not being followed by one of the 15 adult CHD centers and many fall through the cracks when they transition from their pediatric center.
“We are trying to get the message out that CHD is a lifelong disorder, and that kids aren’t ‘fixed’ by surgeries, interventions like catheterizations, medications, pacemakers, and/or defibrillators.” says Shelagh Ross . The trouble is getting people excited enough to be involved because unless you have CHD or you are a parent of a child with CHD you are not going to get it. CHD lacks the fear factor that some of the other more high profile diseases have. CHD patients often look healthy so it’s an invisible disease, something that as a mother to a son with CHD I have come to know only too well. How many times have I heard how good he looks, how healthy, when in fact it’s a constant source of worry for us. They repair during surgery, they don’t cure. These aspects of CHD are all reasons for the lack of funding, the CCHA is trying to raise the profile of CHD so that things can change, so that they can reach those patients who got lost in the system post pediatrics and get them to follow-up at a specialized clinic and receive the care they need; so that the kids coming out of pediatrics in the future will transition smoothly into adult care, and so that young cardiologists can specialize in CHD care. With the survival rates for CHD climbing the need is growing critical for adult patients.
“It always surprises people when I say that there are an estimated 180,000 Canadians with CHD, 100,000 with Parkinson’s, 75,000 with MS, 58,000 with HIV/AIDS, 50,000 with Cerebral Palsy and 3,600 with cystic fibrosis – but you almost never hear of walks or runs or fundraisers of any kind for CHD. Most people assume that the Heart & Stroke foundation includes CHD as a part of their mandate, but it doesn’t.” – Shelagh Ross
Another road block to care is that most parents get involved with their child’s hospital and direct their funds through those channels. This is something that I, as a parent have done in support of Joshua. The problem of course is that paediatrics only last until they are 18 years old. We need to get working to improve things for the growing number of survivors, many of whom will need specialized care in the future. More and more children with complex heart conditions are surviving and the adult system is not set up to care for them.
What can you do? Shelagh Ross says that the Canadian Congenital Heart Alliance is trying to get more and more people engaged and concerned, that they are asking people to contact our government, hospital administrators, create fundraising events with them so that they have the resources they need to spread awareness across the country.
“I would like to see us grow into a really powerful national organization that supports and advocates for patients of all ages, and their families. I would like to see us lobbying for or even funding CHD research, and developing programs that deal with the psychosocial issues patients have (anxiety, depression), and the healthy living issues that so many patients struggle with (lack of activity, obesity). There is just one psychologist in all of Canada dedicated to helping adults with CHD and she is in the Toronto clinic, there are no social workers that I am aware of.” – Shelagh Ross
On a personal note before I close this post I want to say thank you to Shelagh Ross for taking the time to answer all my questions, and for reaching out to me and offering me a place to share my voice on behalf of Josh and other CHD patients. Please, feel free to check out their website and find out more about how you can help change the face of CHD for adults as well as children.