By Sara Stenabaugh

It’s interesting what the mind remembers after a traumatic event. Mine holds on to a hallway with walls covered in ceramic tiles.

Every morning I walked down that hallway, leaving the maternity ward to visit my daughter in the Pediatric Intensive Care Unit (PICU) at BC Children’s Hospital.

She was only a few days old and struggling for her life.

At night, I would shuffle back down that hallway to the maternity ward, completely exhausted.

Sometimes, I would stop to read the tiles. Most of them were birth tiles, celebrating all the babies born just a few steps away. Others were memorial plaques for all the infants who sadly didn’t make it.

I remember staring at the tiles the night before my daughter’s heart surgery and weeping, worried about which tile her name would go on.

It’s a girl!

We found out early on that we were having a girl. My husband and I were thrilled, since we already had a rambunctious boy.

My pregnancy was fairly by the book. I had nausea and heartburn and felt tired all of the time. It was my second pregnancy, so I felt reassured when all my tests and ultrasounds came back normal.

I went into labour two weeks early and delivered her at Royal Columbian Hospital in New Westminster. As soon as she was born, the nurses noticed that she was blue and wasn’t crying. They gave her oxygen, but she struggled to breathe every time they took off the mask.

The doctor was worried something might be wrong with her heart or lungs and transferred us to BC Children’s Hospital. She went first, while I waited for the second ambulance.

By the time we got to the PICU, the doctors had finished all of their tests. Dr. Shreya Moodley, our pediatric cardiologist, sat us down and told us that our daughter had transposition of the great arteries (TGA) and would need surgery soon.

TGA is a rare heart defect where the two main arteries are reversed. It means blood can’t oxygenate properly. Without oxygen-rich blood, the body can’t survive.

In that moment, everything became a blur, and there was panic. While the doctors explained what would need to happen in the next few days, my head kept spinning with questions: Why? Why her? Why us? What did I do wrong?

The next morning, our daughter underwent a balloon atrial septum, a temporary procedure to help her blood mix until they could perform heart surgery.

She was less than a day old.

New arrival

We met Dr. Sanjiv Gandhi, a pediatric heart surgeon, soon after we were admitted into the hospital. A stoic but kind physician, Dr. Gandhi is a straight shooter and told us exactly what we were facing. Our daughter was very sick, and her surgery would be complex.

At the time, her heart was the size of a walnut, and her arteries were like pin heads. Her arteries were also fragile, so the surgery had to be precise.

The night before the surgery, we spent hours reading and singing to our daughter. We rubbed her hands and wrapped her in warm blankets. I held her as often as I was able. I had to be careful not to tangle all the wires attached to her little body.

While we helped bathe her before surgery, the nurse mentioned that it was a good time to name her. My husband and I had been stuck between two names before her birth and had decided to wait until she was born to decide which one suited her best.

Looking down at her, only one name stood out: Kita.

Kita can mean new arrival or “I have arrived” in Japanese. We thought it was a perfect name for a little girl who was about to get a second chance at life.

When the surgical team came to get her, I felt a rush of emotions that is difficult to explain. I was terrified that something would go wrong. I was terrified that she wasn’t strong enough to handle the surgery. I was scared that I wouldn’t see her again.

I paced back and forth within the hospital, making sure to avoid that long, winding hallway of tiles.

The road to recovery

As soon as I saw Dr. Gandhi walk through the door, I felt an enormous weight lift. Kita’s surgery had gone well, and she was expected to fully recover.

Soon after, she was moved to a different ward, where the nurses watched over her and taught us how to care for her and clean her surgical dressing.

For the first time, we were able to change her diapers, give her sponge baths, and pick her up without help. Every four hours, I would pump my breast milk and bottle feed her so that we could measure how much she was eating.

Each day, she drank a bit more and got a bit stronger. As her health improved, the nurses slowly removed the wires and monitors that she no longer needed.

When the time came to take Kita home, we hugged the nurses and doctors who had spent countless hours caring for her. They had become family and our pillars of strength.

We wrapped Kita up in her new fluffy pink blanket and made our way through the long hallway towards the parking lot.

I didn’t look at the walls. I just held her close and kept walking forward.

Finding community

During the first few weeks at home with Kita, I was both ecstatic and scared. We had both been through so much, and while the well-wishes from friends and family kept pouring in, I still felt alone.

Through the BC Children’s Hospital, we were connected to the Children’s Heart Network, a non-profit organization offering support, information, and education to families who are living with congenital heart disease.

The CHN community welcomed us with open arms. We met families with similar stories. They offered their support and knowledge. We grieved together, picked each other up, and celebrated in all our children’s successes.

The organization has also given us skills and training we needed to keep our kids safe, including CPR training and a virtual session on what to do during the COVID-19 pandemic.

We formed friendships and a sense of community through CHN’s social events, including the Santa Claus breakfast, wine gala, and meet-ups.

Today, our lives are a far cry from a year ago. Each day is filled with dripping sippy cups, scattered Cheerios, and sleepless nights.

Our little Kita is now a thriving 17-month-old, who is a force to be reckoned with. She is loud and stubborn and has an insatiable appetite for chocolate.

She is perfect in every way. ♥

“Kita’s Heart Journey” is from our summer 2020 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.

Kita’s first birthday!

Kita shortly after surgery.

Fun times at the park with brother Jett.

Enjoying CHN’s breakfast with Santa.