Hi, I am Michelle and I am one of the "old guys" who joined Mended Little Hearts to give, hopefully,  a little inspiration to the younger CHD patients and their parents.

 I was born in May of 1960....yeah you read it right...I am *that* old ...in New Orleans.   My mom had a very normal pregnancy.  She began to notice that I was getting really tired just feeding and that I wasn't really gaining alot of weight.  The first pediatrician my parents took me to said I could possible have asthma and that they should just keep an eye on me. Thankfully, my grandmother's neighbor sent over their pediatrician  ( back in the days when docs did house calls )  who immediately noticed that I had a very loud heart murmur.
 
After several caths, EKG's, and X-rays ...because there were no ECHO's back then ....it was determined that I had transposition of the great vessels and an enlarged pulmunary artery. I was literally drowning in my own blood. They also determined that I had a VSD...opening between the lower chambers. ( we'll get to that later ) I had my first surgery at 6 months old and had my pulmunary artery banded .  The surgeon told my parents that nothing could be done for the transposition of the great vessels and that I would be lucky to live to age 5.

By the time I was 6 years old I had two younger siblings, both healthy, and was doing relatively well. My pediatric cardiologist decided to do another cath on me when I was 7 years old. He initially did it with the intention of seeing if the pulmunary band needed to be replaced. It did not...but what he found astounded him. Instead of a VSD he discovered that I only had one ventricle.  ( one lower pumping chamber as opposed to two ) He told my parents the devastating news and also told them that he had no idea how I had survived as long as I had. He said to take me home, not allow me to participate in ANY sports or anything that involved a high activity level..  Ok...I was a kid...what didn't involve high activity !???  He also said that every year I lived would be a gift. The following year I contracted bacterial endocarditis from an infected tooth just to make life a little more complicated for my poor parents and spent several weeks in the hospital on IV antibiotics and several months afterwards on them at home ...just for good measure.

My life, although somewhat sheltered , was relatively normal.  My parents refused to allow anyone to feel sorry for me nor was I allowed the luxury of doing the same. They treated me, for the most part, no differently then my younger sister and brother. I think they had more trouble getting other relatives, friends, and my teachers, to treat me without fear then anything else !  My mother's motto was " if you want to try it go ahead".  That's not to say that she allowed me to do anything over strenuous or dangerous to my health but she didn't hover and I am grateful to her for that.  I learned how to ride a bike and roller skate..perhaps a little later then my peers...but I did it.

One of the best things my parents did for me was to find the things that I was good at and liked doing. The first thing they found out was that I loved to draw and they had me in private art classes by the time I was in kindergarten. I stuck with this all my life. I read everything in sight and was an above average reader . So my mother enrolled me in a children's literary club where I received a new book every month. I also loved music. I did piano lessons for awhile, was in the choir from 5th grade through high school and was involved in speech and drama in high school as well.  My best advice to parents of CHD patients is..don't focus on what your child can't do.  Find out what they CAN do !!  And help them to do it well.

When I was about 12 years old I began to get very sick. I became jaundice and could barely walk across a room without getting completely out of breath. Soon I began to urinate blood...how scarey is that !?  My cardiologist in New Orleans hospitalized me and ran a multitude of tests.  It appeared that I had something called intravascular hemolysis and was in complete heart and renal failure .  I was sent to Texas Children's Hospital in Houston with little hope of coming home alive.  I met my first ECHO in Texas...nothing like they are today. In Texas they did more tests and a cath and found out that I had a sub-aortic stenosis which must have been a little *gift* that the endocarditis left behind.  I had my second heart surgery to remove the sub-aortic stenosis.  The surgeon was Dr. Denton Cooley who was Dr. Michael DeBakey's partner at the time. At this time ( around 1972) Dr. Cooley told my parents that children with single ventricle defects didn't live long enough to graduate from high school.

The following year my dad's job transferred him up to the Washington D.C. area.  We lived in Maryland and I was in the care of the pediatric cardiologists at Children's Hospital National Medical Center in D.C. . I went on to high school and did all of the normal teenage things.  I graduated and went to college majoring in both art and early childhood education. After I graduated from college this gal ( who wasn't supposed to be around much after high school ) got an apartment of her own and went to work in  a day care as first a staff member and then, eventually the assistant director.

I was having a great time as a working single girl. Then ,in my mid-20's, I began to become sick alot and get very tired and run down. My ped. cardiologist did a cath and then began to talk to me about a relatively *new* surgery called a Fontan. He said that it would improve my life and that if I didn't seriously consider the surgery he could not see me living into my 30's.  Well...THAT wasn't a hard decision was it ?!    I was 27 years old and it was 1987. At this time one of the few places where the Fontan had been "perfected" was at the Mayo Clinic in Rochester, Minnesota.

I had my Fontan at St. Mary's Hospital ( which was part of the Mayo Clinic) and spent a good month in the hospital. The surgeon was Dr. Francisco Puga.  It was an extremely rough surgery for me.  I returned to work at the day care about 3 months after the surgery. Doing 8 to 12 hour days assistant directing at a day care was not going to work for me anymore so I got a job as a teacher at a local pre-school teaching 4 year olds.

I got married a little over 1 year after my Fontan. Two years after my Fontan (1989)  I began to have both bradycardia ( an extreme slowing of the heart rate ) and atriel flutter ( a rapid beating of the upper chambers ) and had to get the first of many pacemakers. One of these days they are going to develope one with a life long battery !! 

I wanted children badly but found out that because of the nature of my heart defect it would be extremely dangerous for both me and the baby to attempt a pregnancy. This was more devastating to me then anything I had ever experienced in my life. But I did not want to be faced with the decision to have to end a pregnancy because of MY health. So we decided to adopt and in April of 1993 we got a six month old baby girl from Ukraine and it's the best thing that ever happened to me. I quit my teaching job and became a full time mommy !

In 1998 we moved here to Tampa. My adult congenital cardiologist from Children's National Hosp. in D.C. referred me to the great group of docs at All Childrens' to take over my care.    My daughter's father and I split up when she was about 8 years old.  I returned to teaching pre-school and work at a Christian school that I dearly love.  In 2005 I married the most wonderful man in the world , my husband Craig, and became step-mom to his son also.

Life goes on. Having a heart defect is an inconvenience but not the end of the world. When I was a little girl I asked my mom why God gave me a heart defect.  She said that she did not know but what she did know was that God has a reason for everything He does. I believe that God wanted to use me to show the great things that only He and He alone can do in people's lives if they just have faith.  Faith is the one thing my parents clung to and taught me to cling to throughout my life.

Please feel free to drop me a line, ask me a question, or just share your experiences.  My e-mail is MichNAm@yahoo.com.