Kieran’s Story: Ectopia Cordis
June 14, 2023
Many times, we link to diagnosis stories on various blogs, newspapers, or even medical sites. This Wednesday, we are privileged to share the story of Kieran on our own blog.
In November 2014, Kieran’s family received a prenatal diagnosis, learning their little girl would be born with ectopia cordis. Ectopia Cordis is a condition that results in the heart being located outside of the chest. In addition, they learned her liver would be outside of her chest as well. While there are four different presentations of this condition, Kieran had thoracoabdominal, also known as Pentalogy of Cantrell. The statistics gave them little hope, but Kieran showed them all that she was strong.
As doctors reviewed her condition, they found that though she had ectopia cordis, many of her other conditions were mild. Mild enough that if she made it through the surgery for ectopia cordis, she would likely do very well.
The article from Today provided a quote from Dr. Veitz, their surgeon, “Over 60 doctors and nurses from 12 different specialty teams (from obstetrics, anesthesia, cardiology, neonatal and more) came together in an hour and a half to get Kieran into the world as smoothly as possible.” The teamwork shown by the medical staff is inspirational.
The surgery was a success. Her mother shares new updates about Kieran in the text below. At times, we learn of a diagnosis and assume this is the end, yet for Kieran, it was just the beginning. We hope this story gives you hope to find out what your diagnosis will mean for your family and to seek help and support.
Read more about her initial diagnosis and surgery on Today.
Below is an update on Kieran from her mother, Caitlin Veitz, who runs @Kieranstrong on Facebook.
Kieran just wrapped up 2nd grade. She loves kitties and has probably two dozen stuffies that are kitty cats, but her faves are Pickles, Pig, and Hu, which are named after the cats in Cocomelon, Home, and Secret Life of Pets 2. She also enjoys bowling, arts, math, science, and reading. I’ve coached her Rec soccer team the last two seasons. As a family we often go camping in our trailer camper – well, really we hope “glamping.”
Before Kieran’s heart surgery in November 2019 to close her VSD, she wasn’t even on growth charts and hadn’t gained weight in 6 months despite eating 2 to 3 times what a typical four year old would eat. Now, at 8, she’s in the 12th and 20th percentiles for height and weight respectively. She has two younger siblings who are heart healthy – a 4 year old sister, Blair, and a 1 year old brother Collin.
– Caitlin Veitz
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