The day the white-coated specialist announced, “I’m sorry. Something’s wrong with your baby’s heart. She probably won’t live to be born,” was the scariest day of my life. He gave us a choice in that office, one that he said would be easy. He felt that her life would not be worth living. It wouldn’t be worth the sacrifice we would have to make.  

We disagreed.

I didn’t feel brave that day, covered in cold ultrasound goop, snotty-nosed and sobbing that half of my unborn daughter’s heart was missing. But I learned that brave is doing the right thing when it doesn’t feel like it’s worth doing.

When our heartbroken baby was born four months later, the blue-gloved audience waited. She’s too purple, they said. Her blood isn’t getting enough oxygen, we heard.

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So we let the med flight team tangle her up, cart her off, and fly her to Children’s Hospital in Philadelphia (CHOP) where her 5-day-old body endured a 4-hour open heart surgery.

We brought her home 10 days later.

Then at 8 weeks old Annie’s heart failed. Real life screeched to a halt. We stuffed a duffle bag full of travel shampoo and clean underwear to carry on a medical jet so that we could live 31 days in the Philadelphia Ronald McDonald House.

That’s when my heart failed. I knew that I was praying to a God who could heal, but after all of my prayers, Annie was bedridden and kept alive by an IV drip of heart failure meds. That wasn’t exactly what I was praying for.

We got to come home for three short weeks, where we fought for Annie’s life with oral medicines, oxygen cannulas, and frequent checkups. Finally we made the 1,300-mile journey to Philadelphia again, complete with a midnight call to CHOP’s cardiology emergency number from our Virginia hotel room. One of us held a blue-faced, vomiting baby and the other begged for answers from a doctor still 500 miles away. We made it to CHOP and handed 3-month-old Annie over for her second open-heart surgery, a surgery we were told she had a 60 percent chance of surviving. The odds were in her favor!

She came home five days later to swim and swing and snuggle with her big sister. And to remind us that we aren’t promised tomorrow, so we live up today with gratitude and courage.

I hate it, but we’re here again. Praying that somehow there are answers to keep sustaining her body from the complications of her 3rd open heart surgery.  

Clearly our life with Annie hasn’t been easy. It hasn’t been cheap. It hasn’t been normal. It hasn’t been neat and tidy. And of course, saving Annie’s life hasn’t been all that convenient.
But it’s been worth it.  It’s absolutely been life’s greatest challenge but equally humble honor to be Annie’s mom.

To be the mother loving a child who everyone thinks will die too soon.

To be the mother comforting a child who knows all the truth of her condition.

To be the mother nodding and smiling, passionately thanking a discharge team’s recurrent announcement. “We’ll give her 6-8 weeks,” they say with smug, forced grins. “Enjoy your trip home.” And we were free for another day to live life on our own. 

And somehow since we chose life six years ago — while we all wait for Annie's half heart to fail– we just keep living!

I picture those 20-week-old fetus hands covering her face when I hold her thumb tightly to clean the red blot from a weekly finger prick.

I remember those skinny, unborn legs when I pretreat pink leggings discolored with brown sludged knee stains from digging for worms on a kindergarten playground.

I remember the doctor’s warnings of Annie’s shortened life expectancy when she darts the entire length of the soccer field chasing her ball to the net.

Every three months when I’m scared to death in some cardiology waiting room, I close my eyes and picture preborn Annie that day. And I remember that we made the right choice to keep her, to want her, to love her. 

I’m going to keep making that choice every day I get to. And thanks to the care at CHOP those days keep coming. And we have the hope of so many more. 

So after returning to Philadelphia multiple times for surgery and cardiac care, we decided to move to Pennsylvania to ensure she would always have access to world-renown heart care.

Today, Annie is a happy kindergartener who loves dance class and hopes to become a "baby doctor" like the ones who saved her life. To read more of Annie’s story visit HeartForAnnie

With your help, we can better understand the causes of pediatric heart disease, develop new treatments, improve long-term outcomes and offer new hope to other families like Annie’s who need it most.

Why We Spin:

  • Little hearts need us:  Parents shouldn’t have to hear the words “your child has congenital heart disease.” Yet, 1 in every 120 babies born in the U.S. are diagnosed with congenital heart disease.
  • Together, we’ll create a breakthrough for every child: “I can’t think of anything more important than taking a child who has a fatal heart disease and getting them through to live to be a grandparent,” says Matthew Gillespie, MD, Interventional Cardiologist at CHOP. “We have in recent years made incredible, important breakthroughs that nobody else has had in some of the most important issues affecting our patients. We really need the support of philanthropy to make that possible.”

How Can You Help:

By donating to support pediatric research at Children's Hospital of Philadelphia, you are offering sick children and their families hope for a future free of disease.

 

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