What happens when one daughter, in a set of twins, is diagnosed with a congenital heart defect and the other twin is heart-healthy? How can a family handle having one child in the hospital, separated from her twin? What should families tell their children about their medical history? What is the value of sharing family stories?
Lisa and Michael Olivares are parents to identical twins Mabel and Maggie, born in 2013. The pregnancy was complicated by Twin-to-Twin transfusion syndrome and Mabel was smaller than Maggie. Two days after they were born, a nurse picked up a heart murmur in Mabel. She was diagnosed with coarctation of the aorta and had surgery at 9 days of age.
Just after her first birthday Mabel was diagnosed with subaortic membrane, and had her second surgery shortly before 2 years of age, followed by a third emergency surgery at 4 years of age due to heart and lung symptoms. At the age of 4, she developed heart and kidney failure but has thankfully responded well to medical therapy. Mabel also attended physical therapy for musculoskeletal hypermobility but she has graduated from physical therapy!
Mabel loves playing dress-up and being outside in the fresh air with her twin sister Maggie. She was nominated for Make-A-Wish and the family spent a week at Give Kids the World Village in Florida where Mabel met her favorite princess - Snow White - at Disney World.
Today the Olivares share with Anna what their medical journey with Mabel was like, some advice for other parents going through the same kind of medical journey, and why they feel sharing family medical stories is so important.
Links to organizations mentioned in this episode:
Songs of Love: The Medicine of Music: https://www.songsoflove.org/
Make-A-Wish Foundation: https://wish.org/
Give Kids the World Village: https://www.gktw.org/
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