Pregnant Couple Takes Genetic Test as a Precaution, Then Gets a Call

A routine precaution during pregnancy quickly became a life-altering journey for one Australian couple after genetic screening revealed they were both carriers of the same rare condition.

Georgina Trousas, 40, and Adam Lagus, 39, from Sydney, opted for expanded genetic carrier screening while expecting their first baby.

The test looked for around 800 genetic conditions, and the couple never imagined it would uncover anything significant.

Georgina said she and Adam were told the likelihood of them both carrying the same genetic condition was around 2 percent, leaving them feeling reassured by the results.

Then, a week after celebrating their baby’s gender reveal, the couple received a call from her obstetrician.

“The first thing I noticed was the genetic counselor’s voice before she even said a word,” Georgina told Newsweek. “Something in her tone told me immediately that the news wasn’t what we’d hoped for.”

The screening had found that both she and Adam carried genes linked to oculocutaneous albinism type 1 (OCA1), a genetic condition that affects melanin production in the skin, hair and eyes.

Their unborn daughter had a one-in-four chance of inheriting both genes and being affected by the condition.

“It is a call we will never forget,” Georgina said. “Not just because of the news itself, but because of what it set in motion for us as a family.”

At the time, neither of them knew much about albinism beyond common stereotypes.

“That limited knowledge made the initial weeks incredibly frightening, because we were trying to understand something we had no framework for,” Georgina said.

To learn more, the couple decided to undergo amniocentesis, a prenatal diagnostic test that analyzes fetal DNA from amniotic fluid. The decision was not easy.

An amniocentesis carries a small risk of miscarriage, and Georgina said she spent a week agonizing over whether the procedure was worth the risk.

“I already live with anxiety,” she said. “The idea of going through an entire pregnancy not knowing, with that level of anxiety already present, felt like it would be more damaging than the risk of the procedure itself. Knowing-whatever the answer-would at least allow us to prepare.”

The amniocentesis results confirmed that their daughter had inherited both genetic variants associated with OCA1.

While the news was devastating initially, Georgina said her understanding of the diagnosis evolved dramatically over the months that followed.

The turning point came not from medical appointments, but from connecting with people living with albinism and families raising children with the condition.

The couple met a local woman with albinism for coffee, spoke to parents through online support groups and connected with organizations including the National Organization for Albinism and Hypopigmentation, the Albinism Fellowship of Australia and Vision Australia.

She learned there are seven recognized forms of albinism, each presenting differently.

While children with OCA1 often experience vision differences and require lifelong eye care and sun protection, the severity varies considerably from person to person.

The experience also highlighted the value of genetic carrier screening.

“What I wish more than anything is that we had known genetic carrier screening existed before I became pregnant,” Georgina said.

She explained that many carriers have no family history of a condition. In fact, she learned that around 80 percent of children born with genetic conditions come from families with no known history of them.

Now, just days away from meeting their daughter, Georgina said the diagnosis no longer defines how she sees her child.

“It is one part of who she is,” she said. “And we cannot wait to meet all of the rest.”

The couple have made practical preparations, including installing UV-protective shades and arranging specialist medical care, but Georgina said their focus is no different from most first-time parents.

“The diagnosis stopped being the thing we were preparing for and she just became our baby,” she said. “A baby we are nervous and excited and completely terrified to meet-in the most ordinary, wonderful way. She is already loved beyond measure-and she hasn’t even taken her first breath yet.”

Contact Newsweek editors on this story: Kara Dolman and Emma Lee-Sang

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This story was originally published July 14, 2026 at 11:14 AM.