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Superhero Scars and No Limitations

These are superhero scars and they mean I can do anything.

When I was 18 weeks pregnant, an ultrasound revealed there was something wrong with our daughter’s heart. Terrified, we were sent to Sibley Heart Center at CHOA for a prenatal echocardiogram.  We were told the left side of her heart was smaller than it should have been and her conditions could range from minor to critical. For the rest of my pregnancy, I had prenatal echoes. Although we were scared, we felt confident in the team at CHOA and were happy there was a plan in place.

Sydney was born in the fall of 2012. Before I even had a chance to hold her, she was transported to Egleston’s CICU and diagnosed with a coarctation of the aorta, a ventricular septal defect and two atrial septal defects. This meant that the aortic arch, which carries blood to the left side of the heart, was too narrow, and thus that side her heart was not functioning properly along with three holes in her heart. At two days old, Sydney underwent her first heart surgery to correct the coarctation.

I thank God every day that we live in Atlanta with access to Sibley and CHOA, because that first surgery saved Sydney’s life. Becoming a first time mom is hard enough; doing it with a sick child is terrifying. I credit the wonderful surgeons, doctors and nurses for making my introduction to motherhood a lot less scary than it already was. I never doubted that Sydney was receiving the best care possible.

Our challenges didn’t end after the first surgery, as Sydney remained in heart failure. At eight days old, she came home with us, but on a feeding tube. Her complicated heart anatomy then caused her to develop secondary pulmonary hypertension. She was diagnosed with failure to thrive. At four and a half months old, Sydney had another open heart surgery to correct her remaining defects. Sydney’s surgeons saved our little girl’s life.

We made lifelong connections with people at Children’s who were an integral part of Sydney’s journey. Through this trying ordeal, our Sibley cardiologist was always there when we needed him, as was the medical staff we had grown to love. One nurse, in particular, Jenn Dutton, has become a close family friend. It is hard to go through the most trying time in your life and not connect with the people who fought right there beside you. I know Sydney is here today because of the care she received at Sibley and CHOA.

With a fully repaired heart, Sydney started to thrive. She came off the feeding tube and appointments dropped from weekly to monthly. Today, it’s just a yearly checkup with Dr. Border!  Sydney is one of the most happy, outgoing 5 year olds you’ll meet. She loves being a big sister, singing, dancing, going to school, and wants to be a rock star like Taylor Swift when she grows up. Meeting her now, you would never believe she struggled so hard at the beginning of her life.

Her joy and love of life is contagious to all those she meets. I often say that she was born with the exact personality she needed to fight the difficult battles she did. She proudly tells anyone who asks about her scars that they are “superhero scars,” and that they mean “I can do anything.” She lives a life with no limitations.

There will always be a chance that she’ll need intervention in the future, but I know that between the team at CHOA and my little superhero, we can face anything that comes our way. I want to tell parents dealing with a new diagnosis or upcoming surgeries that you are not alone. Trust your medical team and yourself. You will always be your child’s biggest advocate. There are many other parents, like myself, who are here to provide support and community to fellow heart families.

When Sydney was a baby, it was hard to see a light at the end of the tunnel. Use her as your light! She is not thriving in spite of her heart, but because of it!

#CHD warrior #1in100 #sydneysgotheart

 

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