Health

The News About Jo Jo: Raising a Baby with Down Syndrome

One mom shares the experience of her daughter's down syndrome diagnosis

By Hallie Levine Sklar, Babytalk
 

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.


1
2 3 4 NEXT >

1
2 3 4 NEXT >
PRINT
Quick Poll

What's the most you've ever spent on a single kid's holiday gift?

Less than $100
$100 to $200
More than $200
I'm trying to forget


ADVERTISEMENT
Popular on Parenting.com
Popular on Parenting.com
 
Photo Galleries

Boy or Girl? Fun Ways to Predict Baby's Gender

Just-for-fun old wives' tales to guess the gender of your baby, from Chinese birth calendars to morning sickness to Drano.

promotion
 
Health

Join the Fit Generation

Become a member for a chance to win one of two amazing family trips

Blog: Project Pregnancy

Jennifer Johnson: "'A few weeks ago I had a dream I was pregnant with an alien. It's on the weird side but not as strange as my friend who had a dream she birthed robotic puppies and tried to nurse them." Updated frequently!

Blog: The Parenting Post

My Brown Baby: "My girls' toys reflect the truly diverse world they live in, where the kids who fill their school rooms and playgroups speak different languages and come from different countries and backgrounds and income levels and aren't necessarily a bunch of frilly little tea-toting girls." Updated daily!

30 Brand-New Birthday Cakes

ALL NEW! Super cute and easy birthday cakes you can make from store-bought cake, frosting and candy
Health

19 Famous People with ADHD

Justin Timberlake, Will Smith and 17 other celebs with ADD or ADHD