Shortly after I was born I began to exhibit symptoms that the doctors could only describe to my parents as ‘failure to thrive’.  At five months old, after months of turning blue, limited growth and keeping my mother up almost every night, I was finally diagnosed with congenital heart disease.  It wasn’t until 1969, when I was seven that I was able to have the first of two corrective surgeries to repair the five separate septal defects with which I had been born.  The heart-lung machine hadn’t been miniaturized for use in pediatric surgery until that time.  Dr. C. Walton Lillehei, who helped to create the heart - lung machine and was a pioneer in open-heart surgery, did my first procedure.  I was a bit of a celebrity at New York Hospital.

 

Since that time I have had two additional surgeries to replace my tricuspid valve.  My last surgery was in 2001 and the doctor who performed it did a wonderful job on the close – he made my scar look so much better.  

 

I don’t remember a time when I haven’t seen my scar when I look down.  It reminds me every day of how lucky I am to have been born in a time when my particular type of birth defect could be successfully corrected.  Scores of ‘blue babies’ died before these procedures were perfected but now surgery is performed on newborns.  I don’t hide my scar and it’s not as noticeable as it used to be, but I am still very much aware of it.

 

Having Ted include me in his Scar Art project gave me a different perspective and helped me heal long after I thought the healing was over.  I chose hot pink for the color when Ted ‘painted’ me because I was always told I was a ‘blue baby’ and that my hands and feet were always cold to the touch.  Hot pink is the farthest away from ice blue in the spectrum.

 

Previous Chapters:

 

Part 1 | Diagnosis As an Infant

Alix discusses being diagnosed with Congenital Heart Disease as an infant.

 

Part 2 | Did You Feel Different as a Kid?

Alix reflects on her childhood and growing up with Congenital Heart Disease.

 

Part 3 | Getting Information

Alix tells us how she and her family found information about her condition when she was a child.

 

Part 4 | Major Surgery As a Child

Alix recalls her first major surgery as a young girl.

 

 

 

Part 5 | First Surgery Results

Alix tells us about her results after her first two surgeries.

 

Part 6 | "Growing Up" in a Hospital

Alix recalls her experiences "growing up" in the hospital.

 

Part 7 | Advice for Families

Alix shares advice on how families can cope with similar health situations as well as what support groups, if any, were available when she was a child growing up with Congenital Heart Disease.

 

Part 8 | Cause of CHD

Alix talks about how her mother figured out how she developed congenital heart disease in utero.

 

Part 9 | Staying Healthy

Alix talks about her efforts to stay healthy but also how she is living her life in the moment.

 

Part 10 | Back to the Doctor

Alix talks about having a third surgery due to developing a tricuspid valve regurgitation.

 

Part 11 | Outcome of Surgery

Alix talks about her recovery in the ICU after her procedure to repair her tricuspid valve. After she got out of the hospital she continued to go about life independently but it wasn't long until she started to feel like something wasn't right, again.

 

Part 12 | Reuniting with Childhood Doctors

Alix talks about her fourth surgery and that although it was at a pediatric facility, she was more comfortable because the team knew her complete history from when she was child being treated for congenital heart defect. She also shares about the importance of listening to your body and getting to the doctor if you feel something is wrong.

 

Part 13 | Telling the Doctors

Alix talks about how she actually didn't want anyone to know about her illness and her surgeries as she wanted it to be a private experience. She also didn't want her husband to visit her in the hospital and bring their children along.

 

Part 14 | Something Didn't Feel Right

Alix discusses experiencing a build-up of abdominal fluid retention that, because of being a female with an adult congenital defect, was masking as Stage IV ovarian cancer.

 

Part 15 | "Battle Mode" for Ovarian Cancer

Alix was told that she had ovarian cancer, but due to her surgery for her heart condition, she developed a build-up of fluid in her abdomen.