By Charles Vasquez

I remember as if it happened yesterday.

Not even two months into the pregnancy, we got referred to BC Women’s Hospital for a series of tests and found out our baby had a congenital defect that she would have to endure her whole life. Back then, we were so young, we could not comprehend the gravity of the diagnosis. At one point, we were given the option to terminate the pregnancy. But, upholding our faith and values, we did not even entertain the thought and made a quick decision to choose life.

On December 17, 2012, a tiny star was born. We named her Carlee Nina Vasquez. She arrived a month ahead of schedule at 36 weeks, and oh, she was so small at just 3 kg. She was only 45 cm long and could fit between the tips of my fingers and my elbow. At birth, she was as pale as paper, and severely anemic. She needed a blood transfusion, and multiple other ones followed. Carlee had inherited a bone marrow failure syndrome called Diamond Blackfan Anemia (DBA). It’s a rare disease that occurs in 10 children born out of a million, according to the DBA Foundation.

Carlee spent the first few months of her life, including her first Christmas, at BC Children’s Hospital’s neonatal intensive care unit (NICU). There, they monitored her for oxygen desaturation and provided nasogastric intubation, or NG tube feeding. She needed to stabilize and grow so she could have a heart-stenting procedure.

At six weeks, the doctors could not wait any longer. Carlee was desaturating very often and had to be rushed for an emergency stent procedure, even though she was underweight for the operation. She managed to pull through it, with much thanks to her cardiologist and interventionist, Dr. Kevin Harris.

Our family was then introduced to Dr. Tammie Dewan, Dr. Elizabeth Grant, and a complex care team who became Carlee’s greatest medical care advocates. They gave us much-needed support and attention as Carlee transitioned from the NICU to the recovery ward and, finally, in February 2014, our home.

Our second bedroom turned into a hospital room full of medical equipment. I remember my wife and I learned in a short amount of time to do so many tasks related to Carlee’s medical needs. At one point, we practiced putting the NG tube on each other so we could safely apply it to Carlee.

On September 11, 2014, nine months after she was born, Carlee had her open-heart surgery. It was her mother’s birthday. We waited for hours in anticipation. A bit of relief came after we saw Carlee’s cardiac surgeon, Dr. Campbell, looking relaxed after the operation and standing in line to get a cup of coffee. Not long after that, we were able to see Carlee. It had already been quite a journey. I thought that we were on our way to better days, but I was wrong.

Over the next few months, Carlee suffered multiple lung infections and had to battle through chronic lung disease. She was hospitalized a number of times for long periods.

At one point, a supervirus compromised her immune system and her lungs. It was a Code Blue situation, and I’ll never forget it. She was in very bad shape and required critical medical care. We almost lost her. My late wife broke down seeing Carlee in the pediatric intensive care unit (PICU) for the first time after that episode. “When I walked in the room and saw her in bed with all those attachments, it broke my heart,” she said.

In the end, Carlee’s medical team in the PICU at Complex Care and Respirology took very good care of her, and she made a phenomenal recovery. Since then, Carlee’s medical condition has stabilized. She still regularly visits multiple departments at BC Children’s Hospital. She has had a number of surgeries, including a gastronomy tube procedure and two cleft palate repairs. Last year, she suffered a serious neck injury, breaking her C2 vertebra, and had to wear a halo brace for a few months.

In early 2017, we lost my wife and Carlee’s mother to lung cancer. Having to endure so much already in her early life, Carlee is still too young to understand the devastating loss of her very loving mom. Last month, Carlee turned seven. Despite many challenges, she is a very happy child. She is a little stronger now and is very active. She is blessed with a very loving and supportive older sister and grandparents.

Thank you to all the real miracle workers—the doctors, nurses, and medical staff at BCCH—and to all the community support workers who helped Carlee and our family through all the hardships of the last few years. We haven’t had a chance to appropriately recognize and appreciate them, but we are very thankful and forever grateful to have had them come into our lives.

These days, Carlee enjoys swimming, ice skating, and playing the piano. She now selects her own interests and activities. Recently, she has shown interest in playing the guitar, and she is now enjoying learning with her sister. Carlee is healthy enough to travel and see the world. In the last two years, we have visited places all over North America.

We have also been able to enjoy many wonderful activities organized by the Children’s Heart Network, including coffee groups, holiday parties, and camps. Through this community, we have met and connected with many families who are going through similar challenges. The friendships and a strong support group fostered by CHN reminds families like ours that we are never alone.

When I look at Carlee today and recall everything she’s been through, it gives me pure inspiration, courage, and strength to persevere. Even now, I always catch myself looking at her and having the same thought: You are the most precious thing I have ever seen in this life. She still has a long journey ahead, but I am confident she has the heart and strength for it. ♥

“Carlee’s Story” is from our winter 2020 newsletter, Heart Matters. See our Newsletters page for more stories and to subscribe.