{"id":7369,"date":"2017-11-16T16:22:46","date_gmt":"2017-11-16T21:22:46","guid":{"rendered":"http:\/\/www.myface.org\/?p=7369"},"modified":"2023-06-21T00:01:51","modified_gmt":"2023-06-21T04:01:51","slug":"one-familys-story-hardships-triumphs-son-rare-craniofacial-disorder","status":"publish","type":"post","link":"https:\/\/www.myface.org\/es\/one-familys-story-hardships-triumphs-son-rare-craniofacial-disorder\/","title":{"rendered":"One family’s story of hardships, triumphs with son who has rare craniofacial disorder"},"content":{"rendered":"

By: Sean Dooley, Jennifer Joseph & Lauren Effron for ABC News<\/a><\/p>\n

It was a frigid February night in New York City when Magda Newman was in labor with her first child. With her husband Russel Newman by her side, she labored for nearly 17 hours before giving birth to their son.<\/p>\n

But when she finally delivered, the couple\u2019s moment of expected happiness quickly turned to anguish.<\/p>\n

\u201cI don\u2019t remember fainting, but I certainly remember screaming\u2026 \u2018Oh my god, oh my god, what happened? What\u2019s happened? What\u2019s happening?\u201d Russel said.<\/p>\n

\u201cI saw just shock on people\u2019s faces, big eyes, and I [asked], \u2018What\u2019s going on here? Who\u2014what happened?\u2019\u201d Magda said. \u201cAnd I see them put him [her son] in a little back room. There\u2019s 20 people running in there, doing something. I don\u2019t hear [the] baby crying.\u201d<\/p>\n

Magda said the room was filled with silence, and no one was saying anything to her about her newborn baby. At first she said, she thought he was dead.<\/p>\n

\u201cI\u2019m like, \u2018What\u2019s going on? Is he alive? What\u2019s going on? I want to see the baby,\u2019\u201d she said. \u201cAnd they didn\u2019t want to show it to me.\u201d<\/p>\n

\u201cI think they were scared at first,\u201d Russel said. \u201cBecause he had no cheekbones and no upper or lower eyelids\u2026 just completely disfigured.\u201d<\/p>\n

The baby also wasn\u2019t breathing. Magda Newman was left on the delivery table as doctors worked to save her son\u2019s life.<\/p>\n

Russel Newman said one of the doctors called him out of the delivery room to show him a textbook. He said the doctor flipped open a page showing a black and white photo of a teenager with Treacher Collins syndrome<\/a>. Treacher Collins is an extremely rare congenital craniofacial disorder caused by mutations in the POLR1C gene. It affects an estimated 1 in 50,000 people in the United States. The diagnosis did not show up on any of Magda\u2019s pre-natal scans \u2013 a common occurrence in cases of Treacher Collins.<\/p>\n

\u201cAnd I remember thinking, \u2018That\u2019s going to be my kid?\u2019\u201d he said. \u201cIt was surreal.\u201d<\/p>\n

Nathaniel’s first year<\/strong><\/p>\n

The Newmans\u2019 named their baby Nathaniel and contacted the Institute of Reconstructive Plastic Surgery (IRPS) at New York University Langone Medical Center, a leading hospital working with children who have Treacher Collins. They left a message and within hours, they received a phone call back from Shelley Cohen, a speech and language pathologist.<\/p>\n

\u201cI said\u2026 \u2018Hello. Who’s this?\u2019\u201d Russel said. \u201cShe goes, \u2018It\u2019s Shelley Cohen. Congratulations.\u2019\u201d<\/p>\n

\u201cThat was the first person who said to us, \u2018Congratulations,\u2019\u201d Magda said.<\/p>\n

Before Russel could say anything else, he said Cohen said to him, \u201cHey, Mr. Newman, you had a baby boy, I heard. That’s wonderful.\u201d<\/p>\n

\u201cAnd I remember going, \u2018Are you freaking nuts?\u2019\u201d Russel said. \u201cAnd she said, \u2018Let me just tell you, your son is going to live a long, healthy, happy, wonderful life.\u2019 And I believed her.\u201d<\/p>\n

Nathaniel was transferred to the neonatal intensive care unit at NYU, where he spent the first month of his life. Pat Chibbaro, a pediatric nurse practitioner who worked with the Newmans, said they were \u201cabsolutely devastated.\u201d<\/p>\n

\u201cFamilies will say, \u2018Well, when is the surgery? When is the surgery, that\u2019s going to make this all\u2026 go away,\u201d Chibbaro said. \u201cAnd unfortunately\u2026 It\u2019s a journey. It\u2019s not a surgery.\u201d….<\/p>\n

Read More and tune in to\u00a0 ABC News “20\/20” THIS FRIDAY at 10 p.m. ET\u00a0 to watch the full story!<\/strong><\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

By: Sean Dooley, Jennifer Joseph & Lauren Effron for ABC News It was a frigid February night in New York City when Magda Newman was in labor with her first child. With her husband Russel Newman by her side, she labored for nearly 17 hours before giving birth to their<\/p>\n

Leer m\u00e1s<\/a><\/p>","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"video","meta":{"footnotes":""},"categories":[30],"tags":[],"class_list":["post-7369","post","type-post","status-publish","format-video","hentry","category-spotlights","post_format-post-format-video"],"yoast_head":"\nOne family's story of hardships, triumphs with son who has rare craniofacial disorder - 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\/one-familys-story-hardships-triumphs-son-rare-craniofacial-disorder\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"One family's story of hardships, triumphs with son who has rare craniofacial disorder - myFace\" \/>\n<meta property=\"og:description\" content=\"By: Sean Dooley, Jennifer Joseph & Lauren Effron for ABC News It was a frigid February night in New York City when Magda Newman was in labor with her first child. 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