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Column: Our family’s little heart warrior

I’ll always cherish the moment I read my daughter her first book.

I held her in my arms, careful not to disturb the array of wires connected to her tiny body. The donated book was the first addition to her library card in the “9N Baby Book Club,” a reference to 9 North, the wing that’s home to the Milstein Family Infant Cardiac Unit at New York-Presbyterian Morgan Stanley Children’s Hospital in Manhattan.

I wore a blue gown over my clothes and a face mask — precautions due to COVID-19 — and began to read “Tomorrow I’ll Be Brave” by Jessica Hische.

“Tomorrow I’ll be brave. There’s nothing I can’t do. I won’t be scared but if I am I know that I have you.”

Early the next morning, Aug. 12, my wife, Liz, and I walked alongside our newborn daughter, Winnie Elizabeth, as two nurses carted her from the ninth floor NICU to the surgical unit on floor three. We each kissed her on her forehead in the waiting area and watched as she was wheeled away to begin preparation for open heart surgery.

We had known this moment was coming for four months, yet nothing can quite prepare you to let go of your child to undergo a major surgical procedure on her third day of life.

Our daughter had been diagnosed in utero with a congenital heart defect called Dextro-Transposition of the Great Arteries, or d-TGA. It’s a condition where the two main arteries carrying blood away from the heart are reversed, preventing a proper mixing of blood and thus depriving her of oxygen throughout her body. Left untreated, the condition, which affects about 1 in every 3,413 babies in the U.S., is fatal.

The story began in April, when we were referred to a pediatric cardiologist due to a possible abnormality spotted during my wife’s 20-week scan. We tried not to be alarmed and assured each other it was probably nothing. The baby was most likely in a bad position during the ultrasound, we thought.

Later that month, I was sitting in the passenger seat of our car outside the cardiologist’s office when Liz called me from inside the examination room. I wasn’t allowed inside the building due to COVID-19 restrictions. On speakerphone, the doctor began to explain d-TGA and how our daughter would ultimately need an arterial switch surgery.

It was tough to digest, especially over speakerphone.

Winnie pictured on Aug. 16, four days after surgery. (Credit: Joe Werkmeister)

Over the following weeks, we began to switch care from Stony Brook Medicine to New York-Presbyterian so our baby could be born at the hospital best equipped to handle her imminent medical needs.

Starting in early June, we began weekly trips to 165th Street in Washington Heights for my wife’s appointments. As she headed into the building, I would remain outside and walk the city streets or sit near the entrance to the hospital courtyard and wait for a text message update.

The moment finally arrived on the evening of Aug. 9, as we headed into the city to begin induction. For the first time since the pandemic began, I was allowed inside the building to be with Liz. The process progressed quicker than we had anticipated, and by mid-morning the following day, our baby girl was set to arrive.

As one nurse said during the delivery, it was going to be a “grab and go,” meaning once she was born, she’d be quickly swept away to begin treatment.

At 11:23 a.m. on Aug. 10, Winnie Elizabeth was born weighing a healthy 7 pounds, 8 ounces.

We were extremely fortunate to have learned of her heart condition in advance, which doesn’t always happen for other families. Our girl was immediately surrounded by a team of doctors and nurses, all working together during the critical first moments of life. Within the first hour, she underwent a balloon septostomy procedure, where a small hole is punched in the heart via cardiac catheterization to allow mixing of the blood so it can be properly oxygenated. It’s a stopgap to buy time before surgery can permanently fix the problem.

A few hours passed before we could see Winnie once she was settled into the NICU. Guidelines limited one visitor at a time, so my wife went in first. She texted me how great Winnie looked, even as she was intubated.

She had made it past the first major hurdle. And in that moment, we could cherish the time as new parents.

Later the next day, we learned Winnie was slotted for 8 a.m. surgery Aug. 12.

So many things had lined up in our favor since we learned the unfortunate news of Winnie’s diagnosis. But perhaps the biggest was getting Dr. Emile Bacha as her surgeon. As chief of the Division of Cardiac, Thoracic & Vascular Surgery, Dr. Bacha is considered one of the preeminent doctors for this surgery. She couldn’t have been in better hands.

Just after 1 p.m. on that Wednesday afternoon, Dr. Bacha texted Liz saying “everything went great.”

Our little girl was on the road to recovery.

Each day over the next two weeks would bring new milestones, from extubation, to a chest tube removal, to coming off oxygen.

The 9N wing became our home away from home — as well as the nearby hotel where we slept. My wife and I settled into a daily routine of alternate visits, since we could not be in the room together. The NICU was staffed with a compassionate team of dedicated nurses who each day went out of their way to make sure we were comfortable and informed. We will always be so grateful.

It’s overwhelming at times to think just how many people contributed to Winnie’s care. The doctors, nurses and technicians, all of whose names I’ll never be able to remember.

And our family, friends and co-workers who also provided a ton of support to keep us sane.

On Aug. 24, two weeks after being born, our girl arrived home to begin the normal routine of a newborn. She’s healthy, with a perfect heart.

In the years to come, she’ll learn about the obstacles she overcame so quickly in life. Whatever challenges she one day faces, I know she’ll be ready.

She’s our heart warrior.

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