By Priya Singh, as told to Jordan Davidson, Everyday Health

When my son, Maan, was born we noticed his eyes seemed swollen. The doctor told me some swelling was normal after natural childbirth, especially considering how heavy Maan was – 4 kilograms (almost 9 pounds).

My pregnancy had been uneventful. I went for every recommended exam and routine checkup. There were no concerns during my pregnancy. Everything was normal, including Mann’s delivery at nine months. I was concerned about the eye swelling but my family said, “It’s okay. Wait.”

Several days after we returned from the hospital, someone noticed Maan’s eyes and said, “This is not swelling. This is something else.” Panicked, we took him back to the hospital, where they ran some genetics tests, which, unfortunately, provided no answers. We were referred to the pediatric surgery department, where they ran more tests – including vision tests – all of which came back normal. We left the hospital and returned home without any answers.

A Frightening New Symptom

The swelling in Maan’s eyes stayed the same, but there was new swelling – this time in his abdomen. Nervous for his health, we returned to the hospital. It didn't take long for the doctors to diagnose him with a hernia. But the doctor said we shouldn’t be worried about the hernia -- instead, he said we should be worried about “this.”

“What’s this” we asked. “This is Crouzon syndrome,” he said. “We do not know anything about it.”



Once Maan's hernia cleared, we took Maan for an X-ray and a CT scan so he could be properly diagnosed, if he had Crouzon, which is a genetic condition that affects the development of the skull and face. The scan confirmed Crouzon syndrome, which meant the bones in Maan’s skull were fused – preventing his face from growing properly. The doctor told us he needed surgery as soon as possible.

Unfortunately, our hospital couldn’t do the surgery. Other hospitals denied us because they were unfamiliar with Crouzon syndrome. Several rejected us saying the procedure was too costly, while others said they didn’t have the correct instruments for the procedure or Maan wasn’t their patient.

Then we received a call from our original hospital, saying they would call in a senior doctor to do the surgery. By this time Maan was already 18 months old.