CHD Awareness Week may be over but for me spreading awareness is something that should be done all year long. I want to share one more story with you. A story about a beautiful little girl named Vivian. Her life on this earth was way to short however the impact that she has made in my heart and in the hearts of many others is immeasurable. I would like to thank Vivian's family for writing this beautiful blog post and sharing their story with us. We will continue to fight for awareness in honor of Vivian and all of the other children born with congenital heart defects.
Faces of CHD: Vivian's Story
A very wise man, my father, once told me that he thought I was touched by an angel. That has been something I have returned to many times over the past year and a half. When our daughter was diagnosed with HLHS, the last thing I felt was blessed. Our lives were turned upside down, and we were thrown into a foreign world filled with tough decisions, careful planning, and living moment by moment. But even now, after our little girl has passed away, I feel like I have been touched by an angel because Vivian was with us.
On December 1, 2010, Vivian came into this world SCREAMING. It turned into a little joke in the Cardiac Intensive Care Unit at CHOP. Jake and I talked to many nurses who said that they haven’t been her nurse yet, but then, with a knowing look, they would say, “But I was here on the day she was born.” She was wheeled from the delivery room and screamed the whole way down the hallway, past the family, and through the CICU. It was like she wanted everyone to know that she was here, and she was a force to be reckoned with. We decided at that moment that we would fight just as hard with her. Vivian’s life was filled with many unknowns, and she persevered through some of the hardest procedures anyone should have to face, especially a baby. She had three open heart surgeries, dozens of heart catheterizations, countless needles pricks, ECMO, and a total of four extended stays at the hospital, including her last one that last for almost three months. Through it all, small victories were won and special memories were made. On May 23, 2011, Vivian passed away because of a blood clot that traveled through her man-made shunt, which was providing blood flow to her body. At the time, she was under anesthesia for a smaller procedure compared to the ones she had already endured and was with the same nurses and doctors who had been taking such excellent care of her. We have been told that the some of the nurses were outside the room chanting her name or holding their breath while the doctors tried their best to save her. We know they loved her as much as we did and many thanked us for sharing her with them. Vivian had an amazing family and extended Heart family, and if love could sustain us, she would still be here.
We have learned so much from Vivian during the very short 6 months she was with our family. She taught us that each moment counts because that is how fast things can change. We learned that the world is filled with amazingly intelligent people who save lives on a daily basis. We learned how to put our full trust in people who are a lot smarter than us. We learned that there are generous people all over who volunteer their time or success stories to help lighten the load for others. We learned that sometimes our family must live apart so we can be there for each other. We learned that love and support is all around us, but it is just hidden in the shadows, and emerges when we need it the most. We learned that a little baby can be so imperfect on the inside but can also be the definition of perfection. We learned that the only thing anyone can do for their child is to love them as much as they can for as long as they can.
I shared these lessons in a speech I gave at Vivian’s benefit. This beautiful celebration of her life, which was organized by some amazing friends and family, was such a joyful party full of hope and was held just two days before Vivian died. That is how fast things can change in a Heart Family’s world. We learned so much from our little girl while she was here, but we are continuing to learn from her and be inspired by her strength and the impact her little life had on so many people. Though my Heart Baby is no longer here, I still feel the same things that I felt when she was with us. I still live my life day by day, not looking too far into the future because it is frightening. I still smile and feel happiness, but there is always a cloud of sadness that hangs over. I still ask myself, “Why us?”, but I know I wouldn’t give up the time I had with my little lady. I still hope for the future of other babies with the same condition. I am still searching for the purpose of it all, and I hope to one day pay forward all the kindness that was given to us. I know that I am lucky to have had the time with her that I had, and I try daily to put life into perspective and cherish the things that are truly important. Because the bottom line is that Vivian was here…she was loved…she was an example of how to persevere through the hardest moments of life.
We loved her recklessly and passionately, and I am so glad we did.