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.
Would My Baby’s Eyes Pop Out?
Sometime after Maan’s first surgery I noticed a screw coming out from under his skin. Concerned, I took him back to the hospital. Unfortunately, the specialist who did the surgery only visited the hospital one day per month, and so we had to wait several weeks for him to return.
The doctor provided no answers. The hospital told us the screw was there due to some sort of surgical error. They removed it during an office visit, but that didn’t fix the fact that the surgery had been done incorrectly. The hospital recommended advanced treatment for Maan’s Crouzon syndrome. For the next six months we traveled all over India, going from city hospital to rural hospital, each one telling us advanced treatment was not available in India.
After repeated rejections, I was very depressed. Not only had the operation been unsuccessful, but now Maan was experiencing horrible headaches and bouts of nausea. We would put him to sleep at night, then wake up to him gasping for air. We tried everything to get him to sleep comfortably, but nothing worked. As his eyes began to bulge out from his skull more, I became fearful of his every behavior. I feared him laughing, I feared him crying. I was constantly afraid his eyes would pop out of his head. The doctors told us to schedule another surgery as soon as possible, but we couldn’t. We had no access to treatment.
From Facebook to MyFace
At this point, the idea of traveling outside of India had barely crossed our minds, as we were without the financial means. A doctor recommended I try Facebook, so did and I joined a Crouzon syndrome support group. It was there that I connected with my friend Ellie. Ellie told me about her daughter, who was successfully treated for Crouzon syndrome. I told Ellie about Maan and our quest for further treatment. She offered to give her doctors Maan’s information.
Then something incredible happened. I got a call from the NYU Langone Medical Center’s Institute of Reconstructive Plastic Surgery (IRPS), requesting I send them Maan’s reports. Days later I received a call from Dr. David Staffenberg, a craniofacial surgeon there, informing me that IRPS would do Maan’s surgery for free.
This was wonderful news, but we had no way of getting to New York, and no place to stay once we got there. I began looking for an organization that could help us, which is when I found MyFace, a non-profit organization that helps families whose children have facial deformities. MyFace helped us with everything from airfare to visas – they even helped us with our living arrangements. The only thing left was to leave India.
A Second Surgery and New-Found Hope
My family was skeptical of our decision. My grandmother urged us not to go. “This is god’s gift to you,” she said. “Don’t go there. He will be okay.” But surgery was Maan’s only option; there were no other choices left for our son. It took two years after Maan’s first surgery for us to finally arrive in the United States.
When we got to New York, we met with Dr. Staffenberg and he explained the procedure to us. He introduced us to a little girl with Crouzon syndrome. When we saw the screws coming out of her head we were scared. We came all the way to New York for the surgery, but we couldn’t bear to see Maan with pins coming out of his head. It was hard, but we put aside our fears and went through with the surgery. This will allow Maan a better future, we reminded ourselves.
I cried the first time I saw Maan after surgery. He was all by himself. His face was swollen and bandaged. It was very difficult to see. For two days Maan didn’t speak; he could barely open his eyes, let alone walk, eat, or drink. Maan knows there is something is his head. Because of this, he is hesitant to put it down. At first, after surgery, he couldn’t sleep through the night. Now he sleeps well, eats well, and is generally doing pretty well.
According to Maan’s doctors, what they want to happen is happening. We turn the screws in Maan’s head, as per the instructions we were given. In a few weeks we will stop turning the screws, and Maan will have another surgery to remove the screws and further test his eyes. If all goes well, we’ll be returning home to India in September.
Priya Singh lives in New Delhi, India with son, Maan and husband, Rishi.