My sister, Kristin, was born in January 1980 with TOF. Her complete repair, at Boston Children’s, was one of the first in the country. I know this because Wikipedia states that the complete repairs began in 1981 and I know my sister’s surgery happened in late 1980.*
I never thought about this until my own daughter was born in January 2012 with the exact same defect.
As PCHA celebrates it’s first birthday, I decided to write about birthdays for our blog.
My mom told me that Maggie’s birthday would remind me every year of the pain and anguish we felt after her TOF diagnosis.
I worried about this the entire first year of her life.
Turns out, we arrived home after work on Maggie’s first birthday to 2 baskets of flowers, a balloon flying from our mailbox and a bunch of balloons tied to our front door. Such a joyous day. The next day, Saturday, our family from all over the state came to watch her eat her own little chocolate cake and scoot around with her cousins. We ate pizza and drank soda from paper cups. I never once thought about the day the pediatrician told us our daughter had a severe heart defect that would have to be fixed through open heart surgery.
Why would I? She is alive, she survived 2 surgeries and she is the coolest little 26 pounder who eats Z Bars while dancing to the music from “Paw Patrol.”
My mom also warned me her scar would make me sad. Sometimes I worry that she will feel self conscious and my heart aches to think of a future classmate teasing her or asking her questions about the tiny, white line down her chest. But she asked me a few months ago, “What dat?” and I told her “You had surgery. Just like Aunt Kristin.” So now she points and says “I had surgry? Like, like Kristin and not you?” It’s the sweetest, most innocent comment and it does make me sad sometimes for a quick instant until I thank God and every angel in heaven that our daughter is OK.
Maggie will turn 3 in January and I think I am going to have her party at the circus school in town. I think twirling ribbons with 10 other toddlers after eating a bunch of cake will be a blast. Every birthday Maggie celebrates reminds me of how blessed we are and I send prayers out to all the heart families struggling with their little ones. I do that every day, not just birthdays. We are a special group of people and I don’t take any birthday for granted.
Total surgical repair
The Blalock-Thomas-Taussig procedure, initially the only surgical treatment available for tetralogy of Fallot, was palliative but not curative. The first total repair of tetralogy of Fallot was done by a team led by C. Walton Lillehei at theUniversity of Minnesota in 1954 on an 11-year-old boy. Total repair on infants has had success from 1981, with research indicating that it has a comparatively low mortality rate.
A North Carolina native, Stephanie Dorko Austin works as a political fundraising consultant and serves on the Board of Trustees of Follow the Child Montessori School and the development committee of the Frankie Lemmon School. A Phi Beta Kappa graduate of Trinity College in Washington, DC, Stephanie and her husband, Will, live in Raleigh with their awesome and amazing daughter, Maggie.