A baby born with an extremely rare genetic disorder is finally home after nearly 2 years in the hospital.
A boy named Noah suffers from ATR-X syndrome, an X-linked intellectual disability.
His parents, Carly and Reece of Halesowen, UK, were told the boy had the disorder while the 21-year-old mother was pregnant, according to a news release. He was later transferred to Birmingham Children’s Hospital.
“We were delighted when we found out we were pregnant with our first child, Noah. Everything looked good on our first two takes, but on our third we were told she had a clubfoot on her left foot,” Reece, 22, said in the post.
So, the doctors ordered some tests and finally diagnosed the fetus with ATR-X syndrome.
Basic image of the baby’s feet. A baby born with an extremely rare genetic disorder is finally home after nearly 2 years in the hospital. iStock/Getty Images
It was hard to hear, the father said. “ATR-X was only recently discovered and there’s not a lot of research into it. We joined a lot of ATR-X syndrome groups, but we soon found out that Noah had the deepest case doctors in the UK had ever seen.”
Shortly after the baby was born, they incubated her so that doctors could closely monitor her. But her condition deteriorated rapidly.
“From that day on, Noah was in and out of intensive care, and he was in the hospital for most of his life,” Reece said.
During his two years in the hospital, Noah had five procedures to treat the condition. And he’s well enough now to go home to his family.
“Noah finally came home to us and it feels like a miracle,” Reece said. “He will soon be 2 years old and in that time he was home for only two months. But thanks to all the support from the doctors and the teams at Children’s Hospital, he is smiling and laughing and back home with us. We are done.”
ATR-X syndrome was discovered 30 years ago. Noah has been identified as the most severe case of the condition in the UK. The condition is manifested by characteristic craniofacial features, according to the National Institutes of Health. It also causes developmental delay and intellectual problems.
Noah’s condition caused numerous complications. He has a cleft palate and chronic lung disease. She also has heart problems, for which she needs regular medication.
“We just want to thank everyone at the hospital who treated Noah, which is a lot of people,” Carly said.
Categories: Trending
Source: newstars.edu.vn