Panel: Heterotaxy With No Regrets

Heterotaxy Connection Family Conference 2019

Heterotaxy With No Regrets: A raw, honest discussion about how to make the hardest decisions in a way that leaves you with no regrets.

Katie Elizondo: Katie's husband Nick passed away after a 29 year war with Heterotaxy in January. Katie had to choose whether or not to stand by him and be his caregiver, knowing what that would inevitably mean. It was no choice at all for her. As she says, "He was worth every heartbreaking agonizing beautiful moment."

Jenna Kalk: Although Jenna spends more time than she should thinking of worst case scenarios, she never could have predicted that her daughter Avery, at two years old and after quite a few successful surgeries, would arrest twice after her Fontan, requiring immediate placement on ECMO. After two days on ECMO with no cardiac activity of her own, all of the doctors and surgeons agreed that there was no possibility that her heart would start again or that she would survive. All of their family members came to say goodbye. Luckily, Avery doesn't play by the rules, and through her Jenna has learned that they don't have to follow them either.

Paisley Suddeth: After an incredibly hard start to life, followed by a beautiful year at home, Mallorie Suddeth faced an increasingly difficult recovery from surgery. Weeks passed, options were exhausted and even the best were puzzled by her complexity. Just as strongly as her family knew her fight wasn’t finished when she was a newborn, this time they knew that any more pushing would only be out of their selfish love and desire. The end of Mallorie’s life was nearing, but the matter of time and suffering were questionable. Her parents both held her as she flew from this life peacefully and pain free. Sometimes the hardest decisions to make are the ones that give you the gift of living with no regrets.

Alison Chandra: After being told that the only surgical course available to her son, Ethan, was a single ventricle repair, Alison and her husband sought a second opinion from Boston Children's Hospital. It was a difficult decision, but they pursued a biventricular repair for Ethan in Boston, and after a rough recovery, they can confidently say they have no regrets in changing course.