In the March 11th post I talked a lot about the LCK and CHD's and what we have been through. I received an email in the last few days about Senator Dick Durbin who presented legislation about CHD's that I think would be very helpful and should have been done much sooner. It is called the "Congenital Heart Futures Act". Basically they want to set up a national registry for CHD and disease to help in the research and care of heart patients. It will also issue grants for research and funding.
When Phil and I were informed of Madelynn's heart condition the very first thing the cardiologist told me was, "This is not your fault" they do not know what causes heart defects of any kind in children. My first thought was in the information age we live in today THEY DON'T KNOW????? WHY NOT????
What parent do you know in their right mind would allow their child to be used in a test case to see what works. They are not lab rats, they are children. So this looks like a best case scenerio. I didn't understand until later why a few hours after Madelynn was diagnosed there were 20 people in her hospital room. In preping her for surgery and the very extensive echo they did, it was the best way for the doctor's to learn. Not to mention the fact Madelynn has a rare build to her heart like no one else.
Madelynn's CHD is very common and most of the time it can be repaired by going through the armpit. It is so common in fact that there are three main kinds that are already drawn on a peice of paper, the doctor just checks one off to put in the chart. Madelynn had to have open heart surgery where her rib cage was wired back together until the bone fuses over it. The surgeon had to draw what her heart looks like so that if another doctor looked in her chart they would know her heart is different. Her heart can still function normally and they see no reason why her life can not be lived to the fullest.
One other thing I learned is that there are now more adults living with CHD's than children. That is a superb fact because it says that the pediactric heart doctors have learned more than ever before and children are living longer with these defects or the repairs are working as they should.
Here is the kitch in the git along (as a friend of mine always says) the doctors who only went to school for adult heart patients are not educated in the care of some of the CHD's. So you now have a growing number of adults needing a heart doctor who does not know how to care for them. One of the ways our local hospital does it is that as an adult you see a pediatric and adult heart doctor in the same visit. They see patients together so that eventally the pediatric heart doctors just see the kids and the adult heart doctor can take over as they age. In some cases it means the adult heart doctors are going back to school.
This registry is a great idea. It is still governed with HIPPA laws and an oversite comittee. I am not sure why this senator chose to do this, maybe a personal experience. It doesn't matter, if you go out to the Congenital Heart Information Network (see link to the right) there is a link to the the act and how to contact your senate and house leaders. I have never been one to push my political views on anyone but it would be a great thing if you took the time to contact your congressman/woman and shared your support.
I will be writing our house and senate leaders and sharing our story to help get this passed. It is something I can do for a family in the future so that maybe they do not have to go through what we did or something worse.
I am finished with my soap box. Hope you all have a Great Weekend!! We are to have great spring weather.
TTFN
No comments:
Post a Comment