Mom Opens Up About Fighting for 3-Year-Old Son with Dwarfism: They Gave Him 'a Death Sentence'
Marcella and Mike Stanley, of Overland Park, Kansas, were excitedly planning to welcome their first baby in 2015 when they got the news that would change their lives forever.
At just 20 weeks pregnant, the Stanleys learned that their baby boy, Brody Stanley, had a form of dwarfism. Doctors saw that the baby’s limbs were smaller than the rest of his body, and his spine had an abnormal arch.
“It was shocking. I did feel throughout my pregnancy that there was something different though, just an intuition. We never suspected dwarfism,” Marcella, 32, tells PEOPLE.
“We didn’t care [that] Brody would be a little person. But since there are over 300 forms of dwarfism with varying degrees of health issues, we were worried about his health.”
Throughout the rest of the pregnancy, Marcella and Mike did all they could to learn more about their son’s condition, and Marcella underwent several tests to confirm the diagnosis. Over the months, doctors worked to determine whether Brody’s dwarfism could be fatal, Marcella tells PEOPLE.
Then, a maternal fetal medicine doctors delivered a conclusion that shook the couple.
“The MFM doctor I saw then told us he didn’t believe Brody would survive,” Marcella says, noting that the doctor gave her son a “death sentence.”
“At that point we felt he had made many assumptions; he had not even read my ultrasound or checked the measurements of Brody‘s chest when he told us this. We felt that physician wrote Brody off.”
But the Stanleys, who first shared their story with Love What Matters, wouldn’t accept the answer, and connected with medical staff at another hospital who “believed in Brody.” She gave birth to her son on Feb. 24, 2015 and he was diagnosed with a form of dwarfism called diastrophic dysplasia shortly after.
“We were very relieved. We were hopeful he would be okay,” Marcella says of the moment she and Mike learned Brody’s dwarfism was not deadly.
Diastrophic dysplasia is a nonfatal skeletal disorder that tends to worsen with age, according to the U.S. National Library of Medicine. The disorder often results in clubfoot, a cleft palate, short limbs, osteoarthritis and joint deformities. Diastrophic dysplasia affects about one in 500,000 newborns in the U.S. and most people with the condition live into adulthood.
“Brody’s delivery was stressful,” Marcella says of the birth, adding that he weighed five pounds, 10 ounces, and was 14 inches long at birth. “Once he was able to breath on his own, he needed to learn how to eat. He was born with a cleft palate … This made it very difficult to learn how to eat.”
She and Brody remained in the hospital for more than two weeks. He’s undergone several surgeries, including procedures on his neck, his cleft palate, and clubfoot. As a result of his clubbed feet, Brody has worn casts for most of his young life.
“Brody — and us — have been through a lot in under four years. Each surgery has been hard for different reasons,” Marcella tells PEOPLE. “Thankfully there haven’t been any close calls or times we were worried about his survival after he was born, but it is hard because it seems he is constantly recovering from a surgery, and then we get to a point where he seems to be doing well, and then its time for another procedure.”
Still, photos of Brody show a smiling, bubbly little boy. The family shares his journey on Instagram, giving updates on his health. Although the couple isn’t sure what the future holds for Brody, Marcella says they plan to “take things day by day.”
“Brody is a very smart, funny, resilient kid. We often feel his sense of humor is pretty advanced for his age. I told Brody before he was born, as long as he kept fighting, so would we, and he has never given up,” Marcella says.
“We have every expectation for Brody to go to college and live independently as an adult, he will just need adaptations.”