"Good American Family" Shines a Light on This Rare but Real Dwarfism

Hulu's "Good American Family" tells the tragic story of Natalia Grace, a Ukrainian girl born with dwarfism who was adopted by an American family when she was seven. Natalia specifically has spondyloepiphyseal dysplasia congenita, a bone development disorder that causes people to have a short torso, arms, and legs.

But Grace's story took a turn when her adoptive parents, Michael and Kristine Barnett, accused her of being an adult who was pretending to be a child. The couple also alleged that Natalia tried to hurt them and their children, and claimed she attempted to poison Kristine's coffee.

The Barnetts had Natalia's legal age changed to 22, moved her into an apartment, and left her there, cutting off all contact. The couple faced allegations of child neglect, but were eventually acquitted of the charges. DNA testing later showed that Natalia was, in fact, a child when she was abandoned.

The Hulu series tells the story from several viewpoints and raises a lot of questions about spondyloepiphyseal dysplasia congenita in the process. Here's what a doctor who treats patients with the condition wants you to know.

Stuart Mackenzie, MD, is an orthopedic surgeon at Nemours Children's Hospital in Delaware.

Spondyloepiphyseal dysplasia congenita is a rare form of dwarfism that causes someone to have a short torso, short arms, and short legs, per the US National Library of Medicine. The condition specifically impacts the bones of the spine and the ends of the long bones in the arms and legs.

"In general, skeletal dysplasias are conditions that cause problems with how cartilage and bone grow," says Stuart Mackenzie, MD, an orthopedic surgeon at Nemours Children's Hospital in Delaware. Spondyloepiphyseal dysplasia congenita causes a problem with the growth plate of certain bones, leading to abnormal growth and shape, he explains. "Patients with spondyloepiphyseal dysplasia congenita can also have vision and respiratory problems," Dr. Mackenzie says.

The condition can be detected on a prenatal ultrasound if the scan shows short arms and legs, Dr. Mackenzie says. Genetic testing through amniocentesis (a genetic test of the amniotic fluid surrounding a baby during pregnancy) or chorionic villus sampling (another prenatal diagnostic test) can confirm the diagnosis. But Dr. Mackenzie says that spondyloepiphyseal dysplasia congenita can also be diagnosed at birth by looking at certain features and X-ray imaging.

People with spondyloepiphyseal dysplasia congenita often experience a few common symptoms, according to the U.S. National Library of Medicine:

Spondyloepiphyseal dysplasia congenita happens due to a genetic mutation, which causes a problem with the growth of the bone, Dr. Mackenzie says. That leads to abnormal bone growth and shape, along with vision problems. The condition can be inherited or, more commonly, it can happen from a new genetic mutation, according to Nemours.

Treatment largely depends on the person. Patients will usually be regularly evaluated by a pediatric orthopedic surgeon, according to Dr. Mackenzie.

"As children and young adult adults, these patients can require surgeries to correct their eyes, stabilize their neck, correct curvature of their spine, and rebuild their hip," he says. "Many patients with spondyloepiphyseal dysplasia congenita require joint replacement as adults."

Patients usually have a team of healthcare specialists, including an orthopedic surgeon, neurologist, eye doctor, ear, nose, and throat doctor, and pulmonologist, according to Dr. Mackenzie. They also will often use a physical therapist and occupational therapist. "Health problems can come up that need to be treated right away," he adds.

Still, while people with spondyloepiphyseal dysplasia congenita may end up interacting more with the medical community than others, they're still expected to have a long life.

"Patients with spondyloepiphyseal dysplasia congenita can live a normal and healthy life if they continue to monitor and treat any health issues that may arise and follow the activity limitations given by their doctors," Dr. Mackenzie says.

Korin Miller is a writer specializing in general wellness, health, and lifestyle trends. Her work has appeared in Women's Health, Self, Health, Forbes, and more.