CHD Awareness Week

This week is Congenital Heart Defect Awareness Week so I thought I would start off this post with some CHD facts:

* CHD is the #1 birth defect, yet is the least publicized and is the leading cause of birth-defect related deaths.

* At least 35 different types of CHD's have been identified. There is no cure for any of them.

* About 1 out of every 100 babies are born each year with some type of CHD.

* Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly too many are not diagnosed until after death.

* This year approximately 4000 babies will not live to see their 1st birthday because of CHD's.

* 70,000 children are born with a CHD each year in Canada and it is a proven fact that the earlier the CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. But still newborns are not screened for CHD's.

* 10-11% of babies born with a CHD have TGA -- the same CHD as Joshua.

* Nearly twice as many children die from CHD's each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is 5 times higher than funding for CHD's.

Being that it is CHD Awareness Week I find myself thinking a lot about how Josh's life began. Josh's heart defect was not detected on ultrasound nor at birth and since he presented no signs of heart failure until he was 16 days old Robb and I had a seemingly normal introduction into parenthood as we brought our newborn son home.

Of course that all changed on Sept. 10 2007 when Joshua very dearly died because of his undetected heart defect. That day was extremely difficult; full of extreme sadness, disbelief, guilt and uncertainty, and though I could never have admitted it at the time I think a part of me knew that there was a good possibility that Josh would just not make it. And I remember thinking to myself how grateful I was to have had those two weeks with him...blissfully unaware of the trouble that lay ahead. Thankfully Joshua pulled through but even I couldn't have imagined that he would be doing as well as he is today.

It has been suggested on numerous occasions that an echocardiogram should be performed on all newborns as a screening process for CHD's. As I was contemplating whether or not our already overburdened health care system could sustain the added cost I realized that I need look no further than my own son.

If Josh's heart defect been detected at birth do you know how many times we would have had to go to CHEO for follow-up appointments since his surgery? Three. One follow-up with Cardiovascular surgery and two follow-ups with his Cardiologist. That is seriously mind blowing given the countless number of appointments I have taken him to in the last 16 months. Not to mention two more hospital admissions and a second surgery to resect a portion of his bowel. And then that's not even counting the physiotherapy, occupational therapy and now speech therapy. All these extra appointments and services are dealing with the long-term complications associated with the delay in diagnosing the heart defect. How much money would our health care system have saved if Josh had received an echo at birth?

I am so proud of Joshua and I am honoured to be his mom. He has taught me so much about myself and about life in general and though this isn't the journey I expected as I entered into parenthood I couldn't imagine my life any other way.