Lenna as a baby, wrapped in a multicoloured blanketBy Monika Qually

One of the hardest challenges we have had to face is discovering our second child was going to be born with a congenital heart defect. When we had our 20-week scan, we thought we would just be finding out the baby’s gender. Instead, we also learned that she had transposition of the great arteries, or TGA, and that she would not survive without open-heart surgery.

I remember getting into my car, calling my husband, and just breaking down. The remainder of the pregnancy was hard. because the future was uncertain. But at least when I was pregnant with her, I had a sense of control and of keeping her safe.

After she was born, I had to trust she knew what she was doing, and she did. She arrived a few weeks early. This was not ideal, but that’s just Lenna. No one tells her what to do. We almost didn’t make it to the hospital. I ended up delivering her in the waiting area at BC Women’s Hospital. Our little Smurf rushed into this world, and we got to hold her for a few minutes before she was whisked away to BC Children’s Hospital, where an amazing team took care of her.

Lenna had her surgery at seven days old. This was the hardest day of our lives. Watching her get wheeled through those doors and having to wait was excruciating. After her surgery, we learned there were complications and were told she had to go back into surgery. This little human that we had only known for seven days had already filled our hearts with love. I couldn’t comprehend that she may not come home with us. After what felt like an eternity, we didn’t know if she was still with us. Finally, a nurse told us she was in recovery with Dr. Gandhi, who was by her side, monitoring her excessive bleeding.

The minute I saw her, this tiny little thing, barely taking up a quarter of the bed, relief just rushed over me. She was still with us. My husband, however, broke down seeing how helpless she was hooked up to all the machines. He had been my rock all day, and now that he knew I was safe, it was his turn. It was a long night, but Lenna just kept getting stronger and stronger. And then just like that, they sent us home!

Lenna is a fierce, strong-willed, defiant, and determined girl with the heart of a lion, for which she is named. We are so proud of this amazing little human who has already tackled so much in life. She looks up to her big sister, Everlie, who has been looking out for her from the beginning. Together, they are something mighty.

Her scar used to be a symbol of pain and fear, but it has slowly turned into one of strength and pride. It is her heart-warrior badge. It will always be our reminder. We tell her to wear it with pride and never let anyone tell her otherwise.

Lenna has been our teacher. She has made our family stronger and made me find a strength in myself I didn’t know I had. It has really been an amazing thing to talk to her about it now and see that she understands. The other night I read her a book about a girl with a congenital heart defect. At the end, Lenna saw me crying. She put her hand on mine and said, “It’s okay, Mama. My heart isn’t broken anymore. I am okay.” It was an eye-opening moment. We knew she understood and could communicate to us if she needed to. We have grown as a heart family now, and we can continue to communicate together.

I will always worry just a little bit extra. There are things that can bring me right back to that day, and it can hurt. But I just look at her now and see her beaming face looking back at me, and I know how lucky and blessed we are. I like to think we are part of a VIP club, and the Children’s Heart Network really helps to make that feel true. We are so grateful to have the opportunity to connect with other heart families through the events offered by CHN. ♥

Lenna as a young child, with her family, and with her sister

“Lenna’s Heart Journey” is from our fall 2021 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.