Meet Aubree

Child's Diagnosis: Coarctation of the Aorta, Bicuspid Aortic Valve

Has Kerrington’s Heart impacted your journey? If so, how?:

Yes, by supporting us with care packages while we were in the hospital after Aubree's birth and during her surgery/recovery. Also, we love being connected to other CHD families through the annual Wild Hearts Fun Run and giving back to other CHD families with Kerrington's Heart's Christmas program.

What’s one thing you wish you’d been told at the beginning of your journey?:

To take notes! Aubree has some kidney abnormalities in addition to her congenital heart defects and in the chaos of learning about her heart defect and surgery at just 3 weeks old, I didn't take very good notes on everything for her medical history. It is all so overwhelming, but when it's over, you wish you all of the information about your child's conditions readily available for the future.

Please share a little bit about your story:

I, Stacey, Aubree's mom, was diagnosed with CHD as an infant and had open heart surgery in 1981 to repair my major defect, so we were already very aware of the possibility of CHD before I even became pregnant. We made sure to follow up with my cardiologist throughout my pregnancy and we had the 28 week fetal echocardiogram to check for CHDs in Aubree's heart. We were given as much of an "all clear" as you can be given with a fetal echo, so we thought everything was good and that Aubree would have no heart issues. I had Aubree via C-section the night of Thursday, August 16, 2012, and she appeared to be perfectly healthy. Her daily wellness checks with the hospital pediatrician were all fine, until discharge day on Sunday. We had packed up all of our belongings except for the car seat and Aubree's going home outfit and were just waiting for the hospital staff to bring her back from her last wellness exam to go home. However, they didn't bring her back. They came to tell us that her heart sounded a little bit different than the day before and due to my history of CHD, they wanted to do an echocardiogram just to be safe. After her echo, they came to tell us that they suspected a CHD, but weren't sure which one yet because her PDA had not yet closed (Patent Ductus Arteriosus), so they were taking her to the NICU for monitoring. The next three weeks were a blur of waiting, watching, lots of tests, ruling out a milk allergy due to blood in her stool, being diagnosed with Coarctation of the Aorta and Bicuspid Aortic Valve, transferring to the NICU at Kentucky Children's Hospital, and finally the doctor deciding that we couldn't wait to repair Aubree's CoA - it had to be done before we had ever even had the chance to bring her home. So, at about 3 weeks old, Aubree's CoA was repaired and she recovered with flying colors, being discharged from the hospital just four days after her surgery. Thankfully, ever since, she has been a happy healthy little girl and just by looking at her, no one would ever know she has CHDs. Aubree's CHD story has been one full of blessings and we pray that the rest of her lifelong CHD story is just as blessed and that she can live a long, healthy, normal life.

Meet our 2021 Wild Hearts Fun Run Race Ambassador

Kerrington’s Heart is proud to announce Riley Weigele as our 2021 Wild Hearts Race Ambassador!

Riley was born with Pulmonary Hypertension, but as with many CHD warriors, her diagnosis came later than you might expect.

For most of her life, Riley seemed like a normal and healthy child. She would have the run of the mill viruses-mostly respiratory-that seemed to hit her a little harder than most kids, and a couple of hospitalizations for pneumonia.

She ran and played just like any other kid would.

At 15 months old, the doctor heard a heart murmur when she had a fever at one of her sick visits. She was referred to a Pediatric Cardiologist at UK who said her Pulmonary Valve was thicker than it should be but she would grow out of it.

Around the time she was 3 years old, her parents noticed her getting short of breath or gasping for air when she was swimming at the pool. A few months later, Riley started getting short of breath when she would run, So they returned to the Pediatric Cardiologist. 

The doctor didn’t come back quickly like usual, and I heard her on the phone with Cincinnati Children’s Hospital and mentioning Riley. My heart immediately sank,” said Kelly, Riley’s Mom.

It was a week before Christmas and we were due to go to Cincinnati Children’s on Dec 21 with our new diagnosis of Idiopathic Pulmonary Arterial Hypertension. We had no idea what it was and we were terrified.”

Riley had her first heart catheterization and started on two medications. A few months later they discovered that she was getting worse and started (subcutaneous Remodulin) in March 2015.

Suddenly she could no longer take a normal bath or swim without a special suit. She had to be careful and quit doing a lot of the activities she loved. She had a lot of pain with it ,and was terrified to change it

A year later, in March 2016, she started on IV Remodulin through a permanent central IV line in her chest. This medication greatly improved her heart and lungs, but it came with its own downfalls.

This medication greatly improved her heart and lungs, but it came with its own downfalls. Worries of IV line infections or getting pulled out, but she reminded a persistent little girl.

After two and a half years of having her central line running Remodulin 24/7, in Summer 2018, Riley’s pressures were down to almost normal and she was able to transition to oral medications. This was huge for her and her quality of life. Riley could now swim and bathe like a normal kid and do activities she never could before without worry of infection or her line coming out. Riley continues to remain on oral meds today and is thriving

Riley has been an amazing PHighter; Pulmonary Hypertension Fighter; during it all. She doesn’t let it get her down and always has a smile on her face no matter what she is facing. She has dreams of starting a non-profit to send care packages to PH kids who are in the hospital and help their families while they are in the hospital when she gets older. She is nothing short of amazing! Riley will be a fifth grader at Lexington Christian Academy in the fall and She is a very active Junior Girl Scout!

“We are very proud of Riley and her ability to always persevere through situations she faces. She is such a brave warrior and always tries to maintain her smile during the most difficult of times. She continues to amaze us with her ability to go through so much at such a young age and remain so strong,” Her mom said.

“We are extremely honored that Riley was chosen to be the ambassador of the race. Kerrington’s Heart Inc. has been such a great support system for us over the last few years and we truly appreciate the amazing work that they do each and every day for heart families! We have made the most wonderful friendships through the organization as well.”