Toddler who spent most of his life in NICU is now thriving home in Maine

STANDISH, Maine — A Standish toddler who spent nearly two years of his life in a hospital bed due to several health conditions, including a heart defect, is now back home.

Cody Simmons is not only beating the odds, but he is also an inspiration to other families with sick children. 

From sitting up and playing with toys, Cody has made progress toward reaching important milestones. 

For his parents Ben and Taryn Simmons, watching their nearly 2-year-old son play in the comfort of their living room is a far cry from the hundreds of dark days they spent in intensive care.

“He kept fighting and getting stronger,” Taryn exclaimed.

Cody, affectionately known as Coco, was born seven weeks prematurely and was diagnosed with a rare congenital heart defect. 

At just 6 weeks old, he underwent open heart surgery at Boston Children’s Hospital to close holes in his heart and repair the pulmonary veins. 

Cody has pulmonary vein stenosis, also known as PVS. It’s a rare condition where the pulmonary veins, which carry oxygenated blood from the lungs to the heart, become narrowed, restricting blood flow. 

Doctors did not expect Coco to live to his first birthday. 

“The stenosis was so aggressive, it was closing his veins faster than they could keep them open, and he was projected not to survive,” Taryn said, wiping back tears.

In October of 2023, Cody was diagnosed with pulmonary hypertension, which causes high blood pressure in the arteries going to the lungs. He had to undergo a second open-heart surgery to remove tissue. Then, the following April, Cody underwent a tracheostomy, a procedure that involved creating a hole in his windpipe to provide an airway for breathing.

“After he got the trach, he seemed to change from there and get better,” Ben, Cody’s dad, explained.

Cody was breathing better, and there were fewer infections. He was also growing and gaining weight. 

By May 2024, Cody went outside for the first time in his life. 

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He came home from the hospital last October, after spending all two or three months of his life in a hospital bed. But that also meant bringing home equipment to keep him safe. 

Cody has a feeding tube and is hooked up to a ventilator that monitors how much air volume he is breathing in and exhaling. 

“If anything becomes disconnected just for a brief moment, the ventilator is going to set off the alarm,” Ben explained. 

More breakthroughs, to the surprise of his doctors, Cody does not need as many catheterizations to widen his veins and increase the blood flow. He has weaned off several major medications and could eventually only use his ventilator at night. 

The toddler communicates using sign language, often asking for “hugs” from mom and dad.

Cody, who turns 2 years old on Feb. 25, receives physical, occupational, and speech therapy and is working on putting weight on his hands and knees.

Taryn and Ben are incredibly grateful to family, friends, and strangers following his journey on social media. Many have donated to GoFundMe to help pay medical bills and provide moral support. 

His journey is giving hope to other families working to improve the lives of their sick children. 

“Every week, he is figuring out something new,” Taryn said with a smile.

The hope is Cody could grow out of PVS and only need dilations once a year. Meanwhile, the toddler continues to beat the odds and thrive.