My baby was born with a rare congenital disease, and I didn't realize until he was 2 months old. Googling his symptoms helped me advocate for him.

• My baby was diagnosed with biliary atresia when he was 2 months old.
• While Google helped me identify his symptoms, it was a doctor who listened and diagnosed him.

When my son was 2 months old, my sister-in-law met him for the first time. She wondered why he was still jaundiced, so we Googled it.

If you Google "jaundice baby," the internet reveals that jaundice, a yellowing of the skin, is common and usually harmless. It can persist for the first few weeks of life or longer.

My son, however, had another strange symptom: pale-colored stool. If you Google "jaundice baby light poop," the results are not so innocuous — you enter the realm of rare diseases.

Going down the rabbit hole of internet diagnoses, I knew, like a thunderclap, that my baby had a disease called biliary atresia.

While I don't recommend Googling everything — on the spectrum of hypochondria, I lean toward "We're all dying!" — this time it actually saved my son's life. A doctor diagnosed him, and he had surgery almost immediately.

He has a rare disease

A fear gripped me deep inside as soon as I read about biliary atresia. This wasn't a silly worry coming from my mind but a sheer panic coming from my heart, from a place of instinct. My son was gaining weight and meeting the milestones of babyhood, but now I wondered if he did in fact have a congenital disease.

The next morning, a Saturday, we visited the clinic. The doctor listened as I explained my baby's symptoms: jaundice and a stool color that was never white but consistently pale. I was under the impression that any shade of yellow was OK. Actually, his pale-yellow stool was cause for concern. The doctor prescribed a bilirubin blood test and said she would consult a pediatric gastroenterologist.

First thing Monday morning, the clinic doctor called. I quickly realized we were having a medical emergency. Someone from the children's hospital called to say we should present ourselves at 8 a.m. on Tuesday. "Bring a suitcase," they said.

A suitcase. My baby and I were going to the hospital, and we were staying. As I sat across from the pediatric gastroenterologist the next morning, she explained why: She suspected my son was born with biliary atresia. A surgery called the Kasai procedure is the first step in treating it. It needs to be done before 90 days of life. "Your son," the doctor said, "is 80 days old."

Biliary atresia can be fatal

Babies born with biliary atresia have defects in their bile ducts, the system that carries bile from the liver to the gallbladder and intestines. Faulty ducts cause bile to become dangerously trapped in the liver. Without medical intervention, biliary atresia is fatal by 2 years old.

According to the American Liver Foundation, biliary atresia affects one in 8,000 to 18,000 births throughout the world each year. So in Canada, where I live, 30 babies might be born with biliary atresia this year. In the United States, it might be 300 babies.

The next few days were a blur of tests, visits with specialists, and lots of tears on my part. Only a week after I'd first heard of biliary atresia, my baby underwent an all-day surgery in hopes of repairing his bile ducts.

I don't yet know the long-term prognosis for my son, but I do know that without the actions of my sister-in-law, the clinic doctor, and the pediatric gastroenterologist, my baby might have missed the life-saving intervention he required. I think of those three as his guardian angels.