Monica and Olivia's Story

Hello! My name is Monica Hart, and I am the proud mother to an amazing heart hero, Olivia Hart! Olivia is 12 years old and the oldest of our three kids, and the only one who suffered from CHD (Congenital Heart Disease/Defect).

When Olivia was born, she was a beautiful healthy baby weighing in at 8lbs 11 oz! She had a head full of hair and full squeezable cheeks. As the months went by my chubby, happy baby wasn’t quite herself. One of the first things we started to notice was that she would constantly sweat. Not just a little, but enough to where I would have to change her outfits several times a day. Another thing we noticed was that it would take her longer than most babies I had seen, to simply drink her 8oz bottle of formula. She was always congested and had a cough. She would fall asleep several times during feedings, almost like it was exhausting for her to eat. Then we started noticing her hair would be all over her pillow. She had lost so much of her beautiful, black hair, and I didn’t know why?! She was also still so small; she had only gained a few ounces, weighing only 10lbs at 6 months old.

My momma-gut feeling was uneasy. I had taken her to the doctor several times pertaining to the many symptoms mentioned above only to be told that it was nothing, she was fine, it’s normal what I was going through, maybe try changing formulas. Well finally, we tried a different doctor because she was extremely lethargic and sweaty all day. As soon as they checked her oxygen it was 88! The doctor immediately sent us to the E.R. where she was diagnosed with bronchiolitis; a common lung infection in young children and infants. We had a three day stay in the hospital and were about to be released when I noticed she had extreme labored breathing. I ran to get a nurse and the doctor! As soon as they saw her the doctor grabbed her in his arms and ran to the ICU! It was a whirlwind after that. We had no idea what was going on. They told us they were preparing to airlift her to University Medical Center (UMC) in Lubbock, Texas. 

After we arrived at UMC, we saw the PICU (pediatric intensive care unit) doctor. He proceeds to tell us that our daughter needed emergency open heart surgery! This was a shock! She’s supposed to have bronchiolitis! Why are we talking about open heart surgery? Turns out she was in Congestive Heart Failure and had a collapsed lung! Her chest cavity was filling with fluid. They told us she had a Ventricular Septal Defect (VSD). VSD is an opening in the dividing wall between the two lower chambers of the heart. We were told that they were going to go in to repair the opening. We went through the options on where to send her for the surgery, because they did not have a pediatric heart surgeon at UMC. We were prepared to go to Dallas when our PICU doctor suggested Covenant Women’s And Children in Lubbock. We were able to tour the facility and speak with the surgeon and immediately felt that’s where she needed to be! She was scheduled for surgery the following day, however, after the Pediatric cardiologist reviewed her echocardiogram with us, he told us he noticed multiple VSD/ASD’s (Atrial Septal Defect- an opening in the wall dividing the 2 upper chambers of the heart) instead of one. 

She was so weak and tiny and was not strong enough to withstand a surgery of that magnitude at the time. Over the next month in the hospital, the heart team worked to stabilize her, help her gain weight, and control the fluid building up. She was finally able to have her first surgery, which was a ductus clamp and PA band. The pulmonary artery (PA) band procedure is a palliative surgical procedure that is used to restrict blood flow to the pulmonary artery. This surgery was not a full open-heart surgery through the sternum but through the side under the armpit and toward the back.  After surgery, we immediately started to tell a difference! She still required another surgery, but the doctor wanted to wait till she was a little older and stronger. We continued to see her Cardiologist several times a month, and when she turned 2 years old, we got the all clear to proceed with her second surgery. This surgery would be the full open-heart surgery where she would be put on a by-pass machine while they sewed mesh patches between the two chambers of her heart. They had to sow it into the thin walls of her heart. They had prepared us for the possibility of a pacemaker should they hit a nerve while doing so.

Several hours later surgery was complete and no pacemaker needed! Man, what a mighty God we serve!

Olivia is now 12 years old and is living her best life!! She is a very active young lady who loves riding her horses, participating in 4-H, caring for her many animals, going hunting, and spending as much time as she can with her family! All Glory to God! She is also a huge advocate in spreading CHD awareness! We are so blessed to have the opportunity to raise such an amazing young lady!

When we went through this journey, we thought 100 times, how was this not detected, and how did something like this happen to us? We had no idea how common CHD was in babies and children. We were especially surprised at many cases went undetected. With our newfound knowledge, we took proper precautions in our following pregnancies to make sure something like this would not happen again. We also shared and still share our story with anyone who presents similar symptoms as we did with Olivia.

We could not have made this journey without our faith in God, trusting him every step of the way, and our absolutely amazing family and friends, as well as the absolutely amazing medical team that took care of our girl on her journey. They were truly hand-picked by God! 

One of the biggest things I’ve learned from this journey is to always remember you are not alone! You can do this Mom and Dad! You are you child’s biggest advocate! Follow your gut, because no one knows your babies like you do!