Congenital Heart Disease (CHD) is the #1 birth defect. It affects nearly 1 in 100 babies. I never thought my child could be that 1, but she is, and she is one incredible heart warrior.
After miscarriages and almost a year of trying, we had a successful pregnancy with our rainbow, miracle baby, Gianna Rose. I had a wonderful pregnancy and I loved, loved, loved being pregnant. Gianna was born on the evening of her due date in February 2018 and from the outside, looked like a perfectly healthy baby.
On her second night, the pediatrician heard something irregular in her heart but assured us to not be worried. She then called a cardiologist in who thankfully came in on his day off. They took her from us to perform some tests and hours went by. Finally, they came back – but without Gianna.
What we heard next was that our daughter’s tiny heart was very strong, but not formed properly and she’d need to undergo open-heart surgery to have a chance to live. She was rushed to a local children’s hospital that specializes in these kinds of cases.
Undergoing Open-Heart Surgery
Over the next few days they ran so many tests on her and decided that on her 6th day of life, she’d undergo major open-heart surgery that was described by her surgeon as a 99 out of 100 in difficulty level. They promised to do everything they could, but we were given no promises or guarantees that this would work, just that this surgery, if successful, was the only way she would live.
That night before surgery, we spent as much of it awake as we could to spend as much time with her as possible because we honestly didn’t know if that was our last night with her. The surgery was 7 hours long and by the grace of God, she made it through! It truly is amazing how much strength was in such a tiny body.
The next couple weeks were hard. Seeing our baby look nothing like herself, hooked up to TONS of machines with tubes and wires all over her body, and at one point they kept her chest open while her heart’s swelling went down. We were unable to hold her for over 2 weeks and she underwent a 2nd surgery. The hospital was our home now – we couldn’t leave her.
Heart of a Warrior
After exactly 1 month of highs and lows, we got to take her home!!! It was the best feeling in the world. We don’t take this lightly as there are many parents that don’t get to say that. We know this was, and she is, a miracle.
I think back about it now, and it still feels a bit unreal that I’m writing this – that this was our life, and this is how my daughter started hers – fighting for it.
A common question we get is, “How did you get through that?” If I’m being honest, I don’t know. We just did. We just kept going because we had no other choice. Besides prayer, being there with her and being as strong as possible was literally the only thing we could do for Gianna. We dropped everything and did just that, but she had to do the rest herself and we had to let God handle it.
There were days that I was an absolute mess and then there were days I felt filled with hope and peace. Regardless of how I felt though, I tried to be positive and peaceful around Gianna. We wanted an atmosphere of love, hope and healing around her.
Blessings in Disguise
There are a lot of other ways this situation could have played out, but the specific way it all happened let us know that God was in every moment and there with us through it all. While it was horrible to find out 2 days after our baby was born that she had serious life-threatening heart defects, it was a blessing in disguise.
Statistics show that when women know ahead of time, they often are so stressed, that the baby is born early or at low birth weight. Gianna was as healthy as possible and in the best condition possible going into surgery.
I had a c-section. If I had not had a c-section, we would not have been in the hospital the extra amount of time it took them to find her defects. Had we gone home with her, she would have been in a much worse situation.
We also had a last-minute insurance change that was super annoying and stressful to a 36-week pregnant woman at the time, but had we been with the old insurance, we would not have been sent to the hospital she was sent to. There she had an AMAZING surgeon who had a lot of experience with her condition.
Who knows how this story would have ended if God had not orchestrated it the way He did? All we know is, we are thankful.
Gianna’s Testimony Continues
Gianna has had a 3rd surgery since and we’re told she will need more in her lifetime. I don’t know for sure what that will look like for her, but here’s what I do know: God will be with her through it all. He hasn’t failed her yet and He won’t stop now. Gianna is a fighter, she is strong, brave, and fearless. She brings joy wherever she goes, and she has an incredible story to tell. I can’t wait to see what big things this little one will do.
As we come close to celebrating her 1st Birthday, we couldn’t think of a better time than during Congenital Heart Disease Awareness Week to share her testimony so far. We hope her story encourages you that even in the hardest situation of your life, whatever that may be, that there is love, hope and healing in the midst of it all.
If you’d like to learn more about Congenital Heart Disease and obtain access to tools, resources, support, and quick go-to guides, visit www.mendedhearts.org/learn