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“Your Baby Will Need a Heart Transplant”

Our three days of semi-blissful (it’s hard to maintain bliss when you’re sore and tired and you struggle to get your baby to nurse) new-parenthood shattered into pieces on February 29, 2000. A home-care nurse unwrapped her portable baby scale, laid our naked girl on it, and frowned.

Elli minutes old

“What was her birth weight?” she asked me.

I handed her the discharge sheet. “Seven pounds, eleven ounces,” I said.

She punched some numbers into her calculator. “She has lost too much weight.”

She pressed her finger on the center of Elli’s chest, then picked it up and looked for a second. She repeated this as she slowly worked her way down Elli’s sternum.

“She has jaundice and it is pretty severe. See how her skin blanches yellow when you press it? Look at her skin on her legs. It blanches white. We don’t like to see yellow so far down her chest. You need to have her seen by a doctor today.”

I stammered. “We haven’t picked out a pediatrician yet. She wasn’t due for two more weeks. Who should we take her to?”

She looked through our list of in-network doctors, circling three or four names. “These are all excellent doctors, but this one is the best.” She drew a star by a name. “But you have to get her seen today, whether he can see you or not.”

After she left, I called the name she starred. He was taking new patients, but couldn’t see us today. I called my family practitioner’s office and made an appointment for that afternoon.

As we drove across town, I felt the crazy crying approaching like a wave in the sea. “It’s the baby blues, don’t panic, it’s the baby blues,” I told myself.

My doctor weighed Elli, pressed on her skin the same way the nurse had, then listened to her chest intently. “Something is up,” she told us. “She’s losing too much weight, and her jaundice is severe and needs treatment. The best way to get answers is to take her to Children’s.” She must have read the rebellion in my face because she continued, “I’ll call and tell them you’re coming.”

“We don’t know how to get there!” I complained. The last place I wanted to go three days postpartum was a germ-laden emergency room.

We dutifully trudged out and turned our car south to the hospital instead of north to home. After wandering around town, calling the hospital, and finally finding someone who could figure out where we were and how to get us to the emergency room, we finally walked in, me vowing to never return again.

We prepared to wait for hours, but before we’d gotten settled, a nurse called Elli’s name and took us to a room. Four hours, fifteen needle sticks, an x-ray, an umbilical central line, and an echo-cardiogram later, we found ourselves in a private consultation room watching a cardiologist draw her best guess at Elli’s heart anatomy. We heard the words “heart transplant” and “heart surgery” and “transplant list.” I met my first hospital-grade breast pump, and my husband and I attained a new level of intimacy as he sat with me while I milked myself. We left her in the NICU with strangers and walked out of the hospital carrying an empty car seat.

Elli in the CICUToday is only the third Leap Day since Elli was born. On each of the previous two, I mourned the loss of our healthy typical child. I remembered the double-tragedy of her diagnosis on Leap Day and her brush with death on March 1 during a sudden and extended cardiac arrest. It was a little death, the worst days we’d yet experienced.

This year is different. I’m sad, yes. I’m grieving many things. But this day is no longer the anniversary of the worst day we’ve faced. I can’t watch her flail and hear her grunt and wonder “what if” any more. What if we had found her heart defect before we even took her home? Would the outcome have been different? What if we hadn’t taken her to the doctor or to the hospital? How would I be different if she had died in her sleep at 3 days old instead of at 8 years old?

Today, I remember what the doctor told us in that private consultation room. “If you hadn’t brought her here tonight, she would have died.” I count the 8 years and 8 months she spent with us, and I thank God that we didn’t lose a baby on February 29, 2000.


Life: unmasked buttonOn Wednesdays, I host the Life:Unmasked link-up, where we write naked, sharing the real, imperfect life we’re living. If you’ve written a bare-all post in the last week, or if you do in the next week, drop the direct link to your post into the linky below, and then visit at least 2 other writers and let them know you appreciate their vulnerability. Let’s try something new next week. Let’s all write on the prompt my biggest regret.

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