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Hailey's Story

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.    

Hailey_3.jpgNov. 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)


Showing 2 reactions


commented 2017-02-12 15:55:29 -0500 · Flag
Kelly,
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
commented 2017-02-11 18:30:02 -0500 · Flag
Wow! This brings me to tears for all you have been through. My son was born with TGA Sept. 14, 2006. I’m not sure if it’s the 10 years, the fact that he was full term or that it was discovered inuterin, but at this point it seems that it will be a one time fix for him. I was able to deliver at the U of I, they started prostaglandins immediately to keep the pda from closing so his blood could mix and oxygenate. A balloon stint was then put in the next day so they could stop the prostaglandins because it causes apnea. They could then remove the respirator. At 5 days old he had open heart surgery where an Arterial Switch was performed. 1 1/2 weeks later we took him home. He goes in for yearly check ups as well, only once when he was 8 did he have to have a cardiac cath done to measure narrowing and check his coronary arteries. His narrowing was on the upper limits of normal so at this point nothing has to be done. Every year, every check is a reality check as he is such an active normal kid throughout the year. I am so thankful for the U of I, the amazing staff, physicians and modern medicine. They saved my baby’s life❤.