Welcome Friends!
Sophia M.
Minnesota
Biography
I was born February 15, 2010 to Fred and Jennifer , their 4th child. My parents knew before I was born that my life would start out unlike my sisters or brother. This is because at 23 weeks gestation, I was diagnosed with Hyploplastic Left Heart Syndrome (HLHS), which means I only have half of a heart. After my birth, it was also discovered that I have Total Anomalous Pulmonary Venous Return (TAPVR) where all 4 of my pulmonary veins were not going from the heart to the lungs as they should and were not supplying adequate blood flow.
The only hope for my survival was either surgery or a heart transplant and at 3 days old, I had my first open heart surgery called the Norwood, to reconfigure my heart to work the way it is and to also repair my veins. The surgery lasted 9 hours and afterward I spent 16 days in the CICU at Children's hospital in Atlanta. When I was almost a month old, I finally got to go home for the first time.
My first month home was good, I was eating a little bit by mouth but was still too weak to take more than 1/2 an ounce of milk at a time. I soon developed severe reflux and was unable to keep any of my milk down and I started to loose weight. The doctor's decided it was time to do my second heart surgery.
In June of 2010 at 4 months old I had my Glenn operation. During this surgery the doctors discovered that I would also need to have my veins repaired again, so this surgery was also close to 9 hours long. This time I was only in the hospital for a total of 10 days. Afterwards my reflux appeared to have gotten better to only return in full force a couple of weeks later. I went back into the hospital several times before they finally decided at 8 months old to do a Nissen Fundoplication surgery to wrap my stomach so I could no longer vomit and to also insert a G-tube.
Since then I have not had any major surgeries. I struggled with my aorta narrowing, which is common for my condition, and I have now had a balloon angioplasty for that 3 different times. Currently, the last balloon they did over a year ago is holding well.
In October of 2011 I had a routine heart cath done to see how my heart and veins are doing and unfortunately the results were not what we expected. They discovered that both of my left Pulmonary Veins were occluded (blocked) and there was not adequate blood flow to my left lung which caused it to stop working. After the doctors reviewed all the information, they said that this new problem would be inoperable with all of my health issues combined. My parents even sought a second opinion and it was the same. With this, my parents also learned that I would never be able to receive a heart transplant should I need one later in life.
Currently, despite all of my health issues, I am doing well. Looking at me you would not know that I have a Congenital Heart Defect. I'm a petite girl and my biggest struggle at the time is gaining weight. I only weigh 18lbs. I have a huge personality and I love being silly with my family and making them laugh. I still have one more heart surgery that is planned for my 3 stage, but with the added complication of my lung, we are uncertain when I will have that. In the meantime, I see my Cardiologist every 2-3 months for routine tests and we just take things one day at a time.
My parents, family and friends pray for me everyday. I am a miracle put on this Earth by our God and with the power of prayer anything is possible.
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Birth Date - February 15, 2010
Main Diagnosis - Hypoplastic Left Heart Syndrome
THEME: Princess/Dora
Thank you so much for Sophia's quilt! She loves it!
