In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect.
Today we’ll hear from Hailey’s mom, Brigette
Sept. 9, 1996, our daughters Hope and Hailey were born at 34 weeks.
Within a few hours doctors told us that Hailey had a congenital heart defect (CHD): Transposition of the great vessels (aorta and pulmonary artery switched).
We were devastated.
Needing a procedure to make a hole in her heart larger to mix her blood so that she could survive, Hailey was transferred to the University of Iowa Stead Family Children's Hospital (U of I).
That first year Hailey could not get “worked up” or over exert herself. Our goal was to keep Hailey as healthy as possible for surgery. Shortly after her first birthday, Hailey would have to have an open heart surgery to repair her heart. After surgery, Hailey did great. She was self-restricted in gym class, and generally most people didn’t realize she had a CHD. However, respiratory viruses hit her hard.
Her appointments only consisted of yearly pediatrician and cardiologist visits.
Nov. 2012, everything changed. Hailey couldn’t get rid of an illness and she was admitted to the U of I. It was during this hospitalization we learned that kids with TGA, and that had the surgery Hailey had, were in need of heart transplants. Needless to say, we were in total shock.
The doctors informed us that, as they got older, the right sides of their hearts couldn’t tolerate the pressure and went into heart failure. This was a shock, we hadn’t expected. During that winter our once “pretty normal” 16-year-old, started taking naps and retaining fluid. Hailey was then admitted to the U of I in August 2013, and was sick enough to be listed at the highest transplant status. We were hopeful that, with medication, Hailey could go home with a PICC line and wait for “the call.”
The medicine was helping, but that wasn’t enough. Hailey’s heart was still failing, and she needed a Ventricular Assist Device (VAD) placed on the right side to live. After two months she was able to go home with the PICC line and VAD. Hailey then had frequent appointments and visits from a nurse to our home. Thanks to the medications and VAD, her health actually improved.
Feb. 13, 2014, we got “the call” that a donor heart was available! Hailey received her heart on Feb. 14, and was home one month later.
Hailey is living a very “normal” life, all thanks to her doctors, and a special donor.
Watch this recent video of Hailey talking about growing up with CHD
More information about congenital heart defects can be found at the Center for Disease Control & Prevention (CDC)
Our tears are all Happy tears now! We are also blessed to have the U of I team be our team! They are amazing. Hailey had a balloon procedure to open her PDA at 3 days old. At a year old, when it was time to try “the switch” they felt that her Pulmonary artery was too narrow to be successful or the best option for her, so they did a baffle to redirect the blood flow (Mustard Procedure). I am so happy to hear that your son is doing well! Sounds like “the switch” was very successful for him! Thank you for sharing your story. It is always wonderful to hear stories of other TGA kids! Brigitte