{"id":1003,"date":"2014-07-24T11:09:44","date_gmt":"2014-07-24T11:09:44","guid":{"rendered":"http:\/\/www.myface.org?p=1003"},"modified":"2023-06-20T23:39:08","modified_gmt":"2023-06-21T03:39:08","slug":"toddler-gets-new-face","status":"publish","type":"post","link":"https:\/\/www.myface.org\/es\/toddler-gets-new-face\/","title":{"rendered":"From India to New York: A Toddler Gets a New Face"},"content":{"rendered":"

By Priya Singh, as told to Jordan Davidson, Everyday Health<\/a><\/p>\n

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 \u2013 4 kilograms (almost 9 pounds).<\/p>\n

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\u2019s delivery at nine months. I was concerned about the eye swelling but my family said, \u201cIt\u2019s okay. Wait.\u201d<\/p>\n

Several days after we returned from the hospital, someone noticed Maan\u2019s eyes and said, \u201cThis is not swelling. This is something else.\u201d 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 \u2013 including vision tests \u2013 all of which came back normal. We left the hospital and returned home without any answers.<\/p>\n

A Frightening New Symptom<\/strong>
\nThe swelling in Maan\u2019s eyes stayed the same, but there was new swelling \u2013 this time in his abdomen. Nervous for his health, we returned to the hospital. It didn\u2019t take long for the doctors to diagnose him with a hernia. But the doctor said we shouldn\u2019t be worried about the hernia \u2014 instead, he said we should be worried about \u201cthis.\u201d
\n\u201cWhat\u2019s this\u201d we asked. \u201cThis is Crouzon syndrome<\/a>,\u201d he said. \u201cWe do not know anything about it.\u201d<\/p>\n

Once Maan\u2019s 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\u2019s skull were fused \u2013 preventing his face from growing properly. The doctor told us he needed surgery as soon as possible.<\/p>\n

Unfortunately, our hospital couldn\u2019t 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\u2019t have the correct instruments for the procedure or Maan wasn\u2019t 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.<\/p>\n

Would My Baby\u2019s Eyes Pop Out?<\/b>
\nSometime after Maan\u2019s 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.<\/p>\n

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\u2019t fix the fact that the surgery had been done incorrectly. The hospital recommended advanced treatment for Maan\u2019s 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.<\/p>\n

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\u2019t. We had no access to treatment.<\/p>\n

From Facebook to MyFace<\/b>
\nAt 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\u2019s information.<\/p>\n

Then something incredible happened. I got a call from the NYU Langone Medical Center\u2019s Institute of Reconstructive Plastic Surgery (IRPS), requesting I send them Maan\u2019s reports. Days later I received a call from Dr. David Staffenberg, a craniofacial surgeon there, informing me that IRPS would do Maan\u2019s surgery for free.<\/p>\n

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 \u2013 they even helped us with our living arrangements. The only thing left was to leave India.<\/p>\n

A Second Surgery and New-Found Hope<\/b>
\nMy family was skeptical of our decision. My grandmother urged us not to go. \u201cThis is god\u2019s gift to you,\u201d she said. \u201cDon\u2019t go there. He will be okay.\u201d But surgery was Maan\u2019s only option; there were no other choices left for our son. It took two years after Maan\u2019s first surgery for us to finally arrive in the United States.<\/p>\n

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<\/a>. 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\u2019t 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.<\/p>\n

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\u2019t 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\u2019t sleep through the night. Now he sleeps well, eats well, and is generally doing pretty well.<\/p>\n

According to Maan\u2019s doctors, what they want to happen is happening. We turn the screws in Maan\u2019s 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\u2019ll be returning home to India in September.<\/p>\n

Priya Singh lives in New Delhi, India with son, Maan and husband, Rishi.<\/p>","protected":false},"excerpt":{"rendered":"

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 \u2013 4 kilograms (almost 9 pounds). My pregnancy had been uneventful.<\/p>\n

Leer m\u00e1s<\/a><\/p>","protected":false},"author":1,"featured_media":2037,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[30],"tags":[45,35,138,64,65,204,66,146,80,48,147,67,81,202,180],"class_list":["post-1003","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-spotlights","tag-craniofacial","tag-craniofacial-conditions","tag-craniofacial-difference","tag-crouzon","tag-crouzon-syndrome","tag-dr-david-staffenberg","tag-india","tag-inspiring-story-of-transforming-life","tag-international","tag-irps","tag-life-changing-experience","tag-maan-singh","tag-maann-singh-india","tag-nyu-langone-medical-center","tag-wyss-department-of-plastic-surgery"],"yoast_head":"\nFrom India to New York: A Toddler Gets a New Face - myFace<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.myface.org\/es\/toddler-gets-new-face\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"From India to New York: A Toddler Gets a New Face - myFace\" \/>\n<meta property=\"og:description\" content=\"By Priya Singh, as told to Jordan Davidson, Everyday Health When my son, Maan, was born we noticed his eyes seemed swollen. 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