NOVIE TRULEE’S STORY

My pregnancy with Novie Trulee was healthy. Every appointment, every checkup told me the same thing—she was perfect. Which she still is. I never imagined that just days after she was born, my world would turn upside down.

Shortly after Novie arrived, doctors discovered she had an infection and told me she would need to stay in the hospital for five days to complete a course of antibiotics. I noticed Novies breathing was incredibly fast, despite bringing this up multiple times I was told it was normal each and every time, something in my soul knew something wasn’t quite right. Even thinking she had an infection broke my heart. But on day four, everything changed. Novie was suddenly rushed to the NICU when her oxygen levels dropped dangerously low. That’s when I learned she had pneumonia.

Days passed, and despite being on antibiotics, Novie’s oxygen levels weren’t improving. Watching my newborn struggle to breathe was utterly terrifying. On the seventh day, doctors decided to perform an echocardiogram. Something that would change my life forever.

That test revealed the truth I never saw coming: Novie was born with a rare and serious congenital heart defect called Truncus Arteriosus. Her tiny heart had been working overtime since the moment she was born. My whole world was flipped upside down.

The very next day, my baby girl underwent open-heart surgery.

It was what felt like the longest day of my life. But receiving that phone call at 19:17 to let me know that my sweet girls surgery was successful and Novie was back on the PICU gave me a feeling of joy I can’t explain. But it also followed with fear as the next 48 was crucial for her recovery.

Everything happened so fast. There was no time to prepare, no time to process. One moment home was in the near future imagining our new “normal” life together and the next I was praying for her heart to keep beating. It was the most soul crushing experience of my whole life.

I sat at her bedside day and night. Days after having c section trying to recover myself. But nothing in my world mattered but her and her recovery.

If I had known about Novie’s heart condition before she was born, she wouldn’t have had to spend her first seven days of life fighting so hard just to survive, fighting for every breath, for her heart to keep beating.

But Novie is a such a strong beautiful girl. She is doing better than ever. The amazing surgeons and team fixed my babies heart. Novie continues to amaze me everyday. I’m so lucky to call her mine.

Novie will continue to have cardiac care for the rest of her life. But I know she will go on to be the most extraordinary, amazing, courageous little girl that will shine her way through all stages of her life.

Through Novie’s journey, I’ve learned how important early detection, research, and support are for children born with congenital heart defects. Truncus Arteriosus is rare, but congenital heart conditions affect thousands of families every year.

I am sharing Novie Trulee’s story to spread awareness and to raise donations for a charity dedicated to supporting children and families affected by congenital heart disease. Every donation will go directly toward helping fund research, resources, and support for families walking a similar path.

This cause is close to my heart, and I hope Novie’s story can help bring light, awareness, and hope to others.

Thank you for taking the time to read, share, and support this mission in honor of Novie Trulee.

A baby is born with a serious heart condition every 2 hrs in the UK and despite CHD being one of the biggest killers of infants in the UK, only around half of congenital heart defects are picked up during routine prenatal scanning.

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