BOWLING GREEN, Ky. — Little Rykar Ainsley came into the world crying, wiggling, as sweet as could be and ready for her first bath.

The nurse bathing Rykar noticed she was breathing rapidly and having trouble regulating her temperature. Rykar was moved to the neonatal intensive care unit when she was only six hours old.

Rykar was diagnosed with Tetralogy of Fallot with pulmonary atresia and major aortopulmonary collateral arteries (MAPCAs). Once stabilized, Rykar spent almost five months gaining strength in preparation for her first open-heart surgery. 

Rykar’s pulmonary arteries, which pump blood to her lungs, hadn’t grown to take over from the embryonic configuration of the heart. The MAPCAs condition typically is seen in conjunction with Tetralogy of Fallot with pulmonary atresia.

Tetralogy of Fallot itself is a combination of four congenital heart defects that disrupt the healthy flow of blood through the heart and lungs. Rykar has had to endure 36 surgeries so far.

“It’s remarkable that we got her through it,” said Dr. Erle Austin, a pediatric cardiothoracic surgeon at Norton Children’s Heart Institute. “It was probably because of her strength and resilience than necessarily us.”

Rykar defied the odds. The 5-year-old actually starts kindergarten at Cumberland Trace Elementary this week. Her mother, Kara, said she didn’t expect to enjoy this milestone.

“We never thought we would see this day,” said Kara. “It’s kind of exciting on a normal level and definitely terrifying on a special needs level.”

Kara and Rykar got a chance to meet Rykar’s kindergarten teacher to see how the upcoming school year will play out. Kara said that Rykar’s school work will feature in-person class on Tuesday and Thursday and NTI the rest of the days.

“It definitely is different with a special needs kid. The online learning is going to be a challenge for us especially she’s not going to sit in front of the computer and that’s another reason why we chose to send her to school," said Kara.

The social aspect of school is important for Rykar’s development. Thanks to a smaller class size and social distancing, she will interact with some children her age. For Kara, she hopes Rykar’s story will serve as inspiration for other families with special needs children heading back to school during the COVID-19 pandemic. They just take it one day at a time.

“Every year is just so surreal we never thought we would make it to the first year,” said Kara. “Now we are at year five. It’s just an overwhelming feeling to know we made it one more year.”