Isabella is almost 4 years old. She is your typical toddler with lots of spunk and personality. She loves playing outside with her older brother and with her many baby dolls, including listening to their “heart.” She enjoys bubbles, taking baths and spaghetti.
We first found out our daughter, Isabella, had a congenital heart defect (CHD) at 19 weeks during pregnancy. We went in for our gender ultrasound, and we were thrilled to find out we were having a girl.
It seems like so long ago, but remembering back to that day… the ultrasound tech hovered over her heart during the ultrasound and our excitement quickly came to a halt. Our fear was confirmed a few moments later with the OGBYN, and it felt as if our world was crashing down. Our daughter had a CHD. Our family had no history of heart defects. Why was this happening to us? We were devastated. Up until this point, I had never heard of infants being born with half a heart. Who could even survive that? We felt defeated, emotionally exhausted, worried and terrified. We were scared she wouldn’t make it.
The hardest thing I have ever had to do is watch my child go through open heart surgery. Thankfully, Isabella has done very well. Her condition is very rare and is known as “Holmes Heart” meaning that she has half of a functioning heart. There have been bumps along the way, but with each bump, it has brought us closer together as a family. Being away from my other child multiple times while staying in the hospital is hard, along with the fear that comes with these surgeries. Her brother is 11 years old so he has a pretty good understanding but is still scared for her life. He is very protective of her. This experience has also impacted us financially and emotionally. On a positive note, it has made us reach out to strengthen our faith. I believe that is the only thing that has gotten us through these past few years. I can truly say we now that we live our life to the fullest every day. This has taught us how to really appreciate what we have and the time we have together.
The Ronald McDonald House (Central) has been a huge blessing for us. Whether we stayed just overnight or for a few weeks, we are so thankful for Ronald McDonald House (RMH). The hospitality of the staff and the overall mission just brings me to tears. You never truly realize the appreciation you have for a place like the RMH until you have to utilize it. The Central House is so convenient and I honestly don’t know what we would have done without it each time we have been hospitalized with our daughter. To show our appreciation and gratitude, Logan (11 years) & now Isabella (3.5 years) has helped us collect pantry items for the house. We have also brought food over and cooked at the Central House several times. We also donated a car full of baby dolls and stuffed animals to the RMH Toy Closet!
I would like other parents facing this unknown world of CHDs to know that there is HOPE. The medical profession is making huge strides in regards to congenital heart defects. Researchers are working on amazing advances to allow these children to live a full and prosperous life. There is support available to help you along this journey. Help spread the word about heart defects and how amazing these kids are. Our daughter, Isabella, is very special and inspires me daily.