My daughter Willa was born a day late and weighed 9 pounds. When they took her away for testing because her oxygen levels were low, I thought there was a reasonable explanation. I spent the next seven hours trying to convince my husband Kevin that she was perfectly fine – I had countless ultrasounds and passed the tests. What could possibly be wrong?
Seven hours later, a doctor returned. “I have devastating news for you,” he said. Willa was missing a chamber of her heart. I looked over at my suitcase filled with her little onsies and the baby blanket that once belonged to Kevin. How could I ever bring these things home without her?
At seven days old, Willa had her first open-heart surgery. Kevin and I were told we could accompany her to what they refer to as “The Kissing Station.” It was a corridor outside the operating room where we planted kisses on her forehead and rubbed her tiny newborn hands. After she disappeared behind the doors, we steadied each other as we made our way down the winding hallways that felt more like the decks of a sinking ship.
Five hours later, a nurse called us into her room.
“They had to leave Willa’s chest open,” the nurse said.
My relief that she made it out surgery was again replaced by fear.
The nurse continued: “There is a chance her heart could stop beating after the surgery. If they have to open her back up, they lose time. This way, it’s easy to access.”
I sat there trying to imagine what that looks like. How does one leave a newborn baby’s chest open? The nurse apologized and asked me if I’m okay even when she knows I’m not.
I dreaded seeing what that looked like. But like many things, I had no choice.
A nurse wheeled Willa into the room with an entourage of medical staff and machines trailing behind her. Willa lay caught in a web of cords and wires. Her torso was wrapped in a thick tinted plastic. In the center of her chest, an amorphous shape thumped up against the plastic – a tiny heart in a dark, murky sea. I didn’t cry or panic. I couldn’t take my eyes off of it. I surprised myself. It did not bother me in the way I thought it would.
The nurse watched me. “We can cover it up if you like.”
“No. It’s okay.”
I actually felt an unexpected calm watching her heart beat against the plastic. It meant she was alive.
Two weeks later, I dressed Willa in a Wonder Woman onsie, wrapped her in the baby blanket and took her home. I would later find out we were among the fortunate heart families. Many heart babies stay in the hospital for months on end and some never make it home at all.
Willa would need two more open-heart surgeries to fix her heart: one at seven months old and another at four years old. When I say fix, I mean give her the chance to live into adulthood. She will always be under the watchful eye of her cardiologist.
Today Willa is six years old and just started the first grade. She has a crush on a boy at school, her favorite job is walking her classmates to the nurse’s office when they get injured, and she loves math. I’m not sure where she got the math gene – definitely not from me.
Every 1 in 100 babies are born with a congenital heart defect. Willa has a Goretex tube that works as half of her heart. They began performing this surgery – the Fontan Procedure – in the 1970s so we do not know what complications may lay in her future. Specialists tell us she will probably need a pacemaker one day. By the time she is an adult, I am confident there will be more options available to her. Maybe the pacemaker will be as small as a grain of rice that she can monitor on her iPhone.
For now, we don’t take for granted how fortunate we are to have our daughter with us. I look forward to seeing her realize her dreams one day: to be a part-time baby doctor and rock star. I tell her anything is possible.