Yesterday I posted about a project that I am going at full force in the coming years. The dream of a Heart Institute that melds pre-natal care, pediatric care and adult care under one roof, one care team, one model of care. As I mentioned, this is not a far-fetched dream, the window is open but it will only be open for a shot period of time. If ever there was a time to change the adult care system this is it. I asked each of you, my readers, to help me and I promised to share in the coming days how we need your help. Starting on a journey likes this takes a lot of noise, we need people to stand up and take notice. We need to make them see the problems that need addressing. You can start by sharing yesterday's post with all of your contacts on social media. This is a huge step towards change, social media these days can breathe life into a cause when enough people care to share. (Look at what happened with the Ice bucket challenge!).
Today I am going to ask you to think about doing more than reading about Congenital Heart defects. I am going to ask you to write to your local politicians, you MP your MPP, your city council rep. I am going to ask you to write to every contact you have, everyone with any kind of influence or power, anyone within the media you can think of who may be able to help by lending their voice to this issue. I am asking you to stand beside me and join voices with me. Contact me if you need to get an email address or need help composing the letter... or simply copy and paste the article from yesterdays' post. I am happy to help you.
We need media contacts to get a hold of this story, to share with the masses about Congenital Heart Defects, the gaps in the adult system, and the struggle that patients face.
To make this happen it will take patience, and time, and some powerful and influential people to start talking about it and making it a priority, but, and this is big... it will take you. Friends and family who know and love someone who suffers from a congenital heart defect. Your voice matters. For every child (for the most part) who is born with a CHD there are two parents, four grandparents, and countless friends and extended family; all those people are tax payers with a voice.
This is a large undertaking: I know that I am asking a lot. However, I also know that you all have shown me before (#redforjosh) comes to mind that when you want to, you can make a difference.
Thank you for all your support and action! Feel free to leave comments when you have taken actions to help this endeavour! ---- AND SHARE yesterday's post on your social media... share today's post. MAKE SOME NOISE!!! :)
A deep dive into the unknowns of motherhood and faith. Now also a book!
November 28, 2014
November 27, 2014
I need your help.
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.
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