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

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. [pagebreak]

Complete disbelief

We had been ambivalent parents, Jamie and I. We were in our mid-thirties when we married, self-absorbed and career-driven. Soon after our wedding, at the urging of my ob-gyn, I went off my birth-control pills. "I'm 34 -- it'll take me six months to get pregnant," I told Jamie, but six weeks later I was staring at a pink line in my home pregnancy test. I knew I should feel overjoyed, but I was terrified. I'd never had a strong urge for a baby, never wandered into a children's clothing store to finger tiny sweaters and baby booties. Over the next couple of weeks, we voiced our worries to each other. Would we have the patience to be good parents? Were we really committed to having a child in our lives? Then, at seven weeks pregnant, I woke up to severe bleeding. Several hysterical calls to my doctor later, I lay silently on an ultrasound table while the technician happily pointed out the fetal heartbeat. When the tears came, I was stunned -- suddenly I realized how much I wanted this baby.

When I found out I was carrying a girl, we decided to name her Johanna, after Jamie's grandmother, Chana, who had escaped from and fought the Nazis during the Holocaust. I fell into daydreams about my daughter and what she would be like: Blond and long-limbed like me, sharing my passion for words and running. She would inherit my husband's daredevil impulses, his love of speed, his proficiency as a skier. She would have our stubborn, determined, type-A personalities.

But now a team of doctors was in our delivery room, and with each word it became clearer and clearer to us that she would be none of these things. We stared at them, disbelieving. How could this happen? All of the blood-screening tests and ultrasounds had revealed nothing. Because I was 34, I had asked for an amniocentesis test, only to be reassured that there was no need, that everything looked "perfectly normal." The rest of the pregnancy was uneventful.

"If we had known, we would have terminated," my husband said. The doctors nodded, looking uncomfortable. There was nothing else to say.

An hour later, I sat numb on my bed in the maternity ward, watching my husband's shoulders shake with wrenching sobs. I'd never seen him cry before. He lifted his head and looked at me. His eyes were dead. "How can we, the two least patient people in the world, parent this baby?" he asked.

What could I say? He was right. We were the type of people who expected their kids to be toilet trained by 18 months and reading by 3. How could we have the tolerance and compassion needed to raise a mentally disabled child? I knew virtually nothing about Down syndrome, other than it was associated with certain health problems and that 50 years ago, babies born with it were packed off to institutions. That night, restless despite the sleeping pill I'd been given, I went to the NICU to see my daughter. She lay on her back, her body covered in tubes, and she was screaming. The nurses swaddled her in a blanket and gave her to me, and she quieted, falling asleep in my arms. "She knows you're her mother," they said. But I just stared at her. I didn't know this dark-haired, swollen baby. Where was my blond cherub, my Johanna? [pagebreak]

Turning a corner

The next day, Johanna was transferred for surgery. We had hoped for answers, for reassurances that our baby was fine, but we were met with negativity at every step. As soon as we arrived, doctors warned of the potential health problems Johanna might face. Half of babies with Down syndrome have life-threatening heart defects that require surgery. She would need an echocardiogram, her stomach x-rayed, her kidneys checked, and, of course, there were the developmental delays. "It's not so bad," one doctor said dismissively. "Some even learn how to use the bathroom and dress themselves." Every morning and evening, a team of residents came by while neonatologists pointed out her clinical features, the upward slant to her eyes, her flattened nose, the alleged low muscle tone. She had ceased to be a baby and had instead become a case study in trisomy 21 (the genetic term for Down syndrome).

Yet each day, as the doctors grimly chanted the characteristics that made Johanna a baby with Down syndrome, we claimed her more and more as our own. To us, her eyes were my husband's eyes, her button nose my own. Yes, her ears were set low on her head, another common trait of a baby with Down syndrome, but weren't they the same ears that all the women in my family had?

We saw ourselves in her, in the way she pouted, in the way she wailed with indignity under the bright jaundice lights, in the way she wriggled her way down the incubator with the utmost stubbornness until her toes were touching the bottom, and we fell in love. Her first day post- surgery, she shocked her team of surgeons and nurses when she managed to reach her hand up and rip her feeding tube from her nose. It was becoming clear to us that our little girl was a fighter, battling the stereotypes thrust upon her. "You can't tell me this kid doesn't have hand-eye coordination!" Jamie said gleefully. "Just wait until we get her on skis."

Without realizing it, we had turned a corner and made a decision. We were not going to buy into views of our baby as an extra chromosome. She was, first and foremost, our daughter. After the surgery, which was a success, we insisted she be transferred back to the hospital where she'd been delivered, closer to home. There, the nurses removed the "trisomy 21" sticker from her incubator and replaced it with one that bore her name. I signed her up for a state-funded early-intervention program that provides developmental therapy, and the hospital connected us with other families in the area whose children have Down syndrome. We met many of them and discovered that our nightmare visions were unfounded. Their children were walking and talking and singing and laughing, and, yes, all toilet trained and dressing themselves. We had nothing to fear, it seemed, other than outdated stereotypes. [pagebreak]

Life with Johanna

Today, Johanna -- nicknamed Jo Jo -- is 4 months old. She has reddish-blond hair and hazel eyes that crinkle up when she laughs. She loves to prop herself up on her arms and gaze at herself in a mirror, entranced by her reflection. When we feed her a bottle, her hands grasp our fingers, and she pauses every few moments to bestow on us a beaming smile that melts our hearts. Every morning, we bring her into bed with us to snuggle, and as we inhale the baby-wash scent of her skin and delight in the sensation of her slender arms around our necks, we can't imagine our life without her.

It's not easy all the time, though. We consider ourselves lucky that most of our family and friends have welcomed Johanna with open arms and treat her no differently than they would any other baby. But there are still the occasional comments from people that make me cringe -- like a note wishing us "lots of strength to confront those challenges and burdens ahead." I have to remind myself that these people are simply misguided, as Jamie and I once were. They don't have the perspective we now have that there are many more tragic things in life than raising a healthy child with developmental delays.

Johanna has saved us, in a way we didn't realize we needed to be saved. She rescued us from the über-competitive world of milestones and achievements that dominate the lives of so many people we know. I listen to other moms obsess about why their 4-month-old isn't sleeping through the night or why their 9-month-old isn't walking, and I thank God that's not us. We could have been, so easily, but Jo Jo has taught us to live in the moment. There are so many unknowns with her -- when she'll walk and talk, when she'll learn to read, and when, if ever, she'll live independently. For now, we're taking life day by day. And while my days are filled with coos and giggles, sometimes at night, after she's asleep, I find myself searching the Internet for information about Down syndrome. What I read fills me with dread: talk of increased risk of childhood leukemia, limited job opportunities, early cognitive decline, shortened life spans. It's at these moments that I race into Johanna's nursery and pick her up. As I feel her body, warm, plump, and soft against mine, I realize once again that she's not some statistic in a medical textbook. She's my baby, our Johanna.

Hallie Levine Sklar is a writer in Stamford, Connecticut.

Plus:

Photo Gallery -- A Special Joy: Beautiful Babies with Down Syndrome

Photo Gallery -- A Special Joy 2: More Beautiful Babies with Down Syndrome

POLL: If Sarah Palin were a father to special-needs infant son Trig and pregnant teenage daughter Bristol, what would you think about the VP nomination?

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