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We recently had a healthy little girl with Down Syndrome. What support system do you recommend, and what should we read?
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It's still just one day at a time:
Raising a baby with Down Syndrome, or any baby with special needs, doesn't have to be the hardship many people believe. Learn how one working mother and her husband coped with the shocking delivery room news that their first and only baby, a daughter named JoJo -- who happens to be the same age as Alaska Governor Sarah Palin's four-month-old son, Trig -- had Down Syndrome, and what their life is like today. (Hint: You'll be pleasantly surprised!)
"We need to speak to the parents alone. Now."
The chairman of pediatrics walked into the delivery room, followed by several neonatologists. I'd given birth an hour earlier, to a robust eight-pound girl, Johanna, with a huge head of black hair and a big cry. I was able to cuddle her for only a few minutes before she was whisked away, but I wasn't surprised by that; a week earlier, an ultrasound had revealed that the baby could have an intestinal obstruction. Doctors had warned us that she'd need to be examined immediately. But when I looked at the pediatrician's grim face as the room cleared of family and friends, I knew he had bad news.
"We found a blockage between the stomach and the small intestine, which is known as a duodenal atresia," he said. He then went on to say that Johanna was in the neonatal intensive care unit (NICU) and would be transferred in the next couple of days from our suburban Connecticut hospital to one of the world's leading medical centers in New York City for surgery.
"But it's not just that," he said, and his face took on a pained expression. "A third of all babies born with this condition have Down syndrome."
The room suddenly felt so silent. The neonatologists shuffled their feet uncomfortably. I stole a glance at my husband, Jamie. His eyes were wide, horrified. "What does this mean?" he asked hoarsely.
The pediatrician sighed heavily. "Johanna has the features of a baby with Down syndrome," he said. With those ten words, our dreams for our child were torn apart.
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