Thursday, February 10, 2011

Life with a Congenital Heart Defect

If you have been to my blog recently then you are probably well aware that this week is Congenital Heart Defect Awareness Week. And if you read my blog you probably know that I myself have a congenital heart defect. One reason I feel the need to share this information is because there needs to be more awareness about CHD and its impact on the child and on the family.

It amazes me that even though 1 in 100 children have CHD, making it the most common birth defect, the awareness isn't as high as some other childhood health issues. It is also amazing to me that when babies are born, most hospitals do not even screen for this defect. Sometimes the baby is sent home, unknowingly having a heart defect and by the time the parent realizes something is wrong, it is too late and the baby dies. This is tragic considering that the deaths of these babies could have been prevented by running a few simple tests.

I consider myself to be very blessed in these regards because even though my heart defect (Double Outlet Right Ventricle) was not detected until I was about six months old, I still survived.

DORV is a complex condition in which the two main arteries of the heart (the pulmonary and the aorta) are both attached to the right ventricle. I think it is the aorta that was supposed be attached to my left ventricle instead of my right. So basically, I had a single functioning ventricle and due to this, I eventually became cyanotic because I wasn't receiving enough oxygen. Shortly after being diagnosed with a heart defect by a pediatric cardiologist, my parents took me to Minneapolis for my first heart surgery. I had my second surgery when I was four years old and my third when I was ten.

The surgery I had when I was ten (fontan surgery) really made me believe I was "cured." I had so much more energy and could do all kinds of activities without getting sick with migraines. I felt like I had a whole new life. And the thing was, back in the 80s, the doctors believed that these fontan surgeries were some sort of cure. They had no research to tell them otherwise since heart patients who had the fontan in the 80s were the first children to have this type of surgery.

Now, however doctors are finding out differently. As people my age have gone from childhood to adulthood, they are realizing that though their health may have improved for a while, they usually have to go through some sort of surgical revision so that their hearts can now accommodate their bigger bodies. And the scary thing is that most adults who were born with CHD do not know this and are living their lives believing they are totally cured.

As a child, even though my health improved so much, I continued to see a pediatric cardiologist at least once a year. And even as an adult, I continued to see a pediatric cardiologist even though I was not a child anymore. But these pediatric cardiologists had no experience in dealing with adults with CHD. My sophomore year before college I did go to my annual pediatric cardiology appointment and was told everything looked great. But then just one month later I began having symptoms of congestive heart failure.

 I was put on heart medication for the first in my life. I continued to have problems after that until I finally had another surgery - a revised fontan - when I was 25 years old. Three months later I had a pacemaker implanted for which I need to get a new battery for every four-five years.

Me after my last pacemaker battery change at Mayo Clinic
I know I am partially to blame for this as I was not taking very good care of myself. I was in a stage of rebellion, drinking and partying. Part of me though believed it wasn't going to affect my heart because I had been told by cardiologists that my heart was fixed and that I would not need another surgery.

Thankfully, there are those cardiologists who have recognized the need for adults with CHD to be treated differently than when they are a child. This is why many pediatric cardiologists have gone on to specialize in adults with CHD. It is now recommended that adults with CHD see only these specialized types of cardiologists instead of continuing to see their pediatric cardiologist or a regular cardiologist. And by the way, a regular cardiologist deals mainly with adults who have heart disease and have no experience whatsoever in dealing with CHD. Heart disease is not the same as a congenital heart defect.

I remember one time I ended up in the emergency room and the cardiologist on call was so excited because he had NEVER seen a person who had the fontan surgery done. It did not make me feel very confident in him!

Through living a life with a congenital heart defect, I can honestly say that I know God has had my life in His hands since the day I was born. He kept me here through all of my surgeries and all of my rebellion and even allowed me to have a beautiful and amazing daughter. I am so thankful for all He has done in my life. Medically, doctors don't really know the life expectancy of those with a single-functioning ventricle like mine. Thankfully, my trust is not in them, it is in the Lord and I know He will keep me here for as long as He needs to so that what he started in me will be complete!

If you would like to donate to the cause of CHD awareness you can click DONATE HERE. If you donate more than $10, your gift will be added by 50%. So if you donate $20 your gift will actually be $30, thanks to a generous family who has agreed to match your gift by 50%.

St Mary's Hospital at Mayo Clinic which is where I had my fourth open heart
surgery and also where Faith was in the NICU for two weeks.

1 comment:

  1. Wow, thank you for your courage and honesty. You are inspiring! Hope all works out well for you and yours.

    Sarah Allen
    (my creative writing blog)