Maggie, born 2012Our sweet Maggie was born on January 11, 2012 after a normal pregnancy. During the first exam after birth the nurse told us she heard a heart murmur but not to worry. We were very worried because my sister and my father's first cousin both were born with Tetralogy of Fallot but Maggie was so very pink and normal. The next day the pediatrician ordered an echocardiogram because "her murmur is a 3 on a 1 to 6 scale." It took the techs a long time to do the echo but I really wasn't upset because she was so pink and no one saw anything on the ultrasounds. Plus the nurse at my OB's office told us that I was not high risk because of my sister. We were devastated to learn a few hours later that our tiny baby had Tetralogy of Fallot and would need OHS. I was shocked and scared, as was my husband. I felt guilty even though I didn't do anything risky during my pregnancy. My parents felt horrible for us because they had been through it 32 years earlier with my sister.
Maggie was a "pink tet" for a few weeks but then her pulse ox dropped from 100 to 80 in one week. We love our cardiologist and trust him completely. We scheduled her BT shunt that day and she underwent the first surgery at NC Children's Hospital on March 1st. It was one of the worst days of my life because she was so tiny and I hadn't slept in seven weeks. She did awesome after the BT shunt. She had a cath in August and had her full repair six months later on September 27, 2012. She was only in the hospital for four days and no one can believe all she (we!) have been through. One of the nurses told us to “treat her like a normal baby - just don't pick her up under the arms" which was fantastic advice.
She is toddler now and has so much energy, we can barely keep up. My sister with TOF is now thirty three years old with two heart healthy children and my father's cousin is in her 50's and living a normal life. We are so thankful for NC Children's Hospital, Carolina Cardiology (Dr. Blair Robinson) and all the other heart babies, children and families willing to share their stories.
Story by Maggie’s mom, Stephanie – North Carolina
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Alina, born 2013