Up the Down Staircase
Tyler was barely born when Kevin Huff looked down between his wife Shawnie's legs and noticed that their third child had Down syndrome.
It's hard to pick out the signs of Down syndrome -- the almond-shaped eyes, the low ears, the flat nose -- on a squishy newborn face. But Kevin and Shawnie had practice. Their other son, Braxton, and daughter Tia were born with it, too.
As Kevin recalls, he looked at Tyler's face and said to Shawnie, "I think he has Down syndrome."
"We just started laughing. We couldn't stop laughing," Shawnie says.
They agreed that Santa Claus would come to their house forever. The Easter Bunny, too. Over the years, there's been a handful of families in town who have two children with Down syndrome, but no one can remember a family with three. Down syndrome is a genetic disorder that occurs in about one of every 800 babies, resulting in distinctive facial features, some level of mental retardation and low muscle tone. Once regularly institutionalized, these days people with the disorder often live semi-independently, and work easy jobs. You've probably seen them bagging groceries at your local supermarket.
Down syndrome is often accompanied by serious health problems, including congenital heart defects and intestinal abnormalities. By the time Tyler was born, the Huffs already knew all about that side of Down. Braxton, who would have been almost 6 by now, died of pneumonia when he was a little more than a year old; at birth, his esophagus did not reach his stomach, and his short life was filled with hospital stays and operations.
Tia, who will be 3 next month, had open-heart surgery at four months and is doing well. Tyler, now eight months old, is also healthy.
If statistics are accurate, Tia and Tyler are in for a lifetime of health problems, which could include poor eyesight, thyroid disorders and leukemia. The average life expectancy for a person with Down syndrome is 55.
The idea that your children will never grow old is whimsical and sweet, but it's also sad. There is certainly something melancholy about Kevin and Shawnie Huff. It's hard to tell, not having known them longer, if they were always that way.
Now they are at a crossroads. The Huffs want more children, but they do not want more children with Down syndrome. And as Mormons, they would not terminate a pregnancy.
But the chances are great that their next child would have Down syndrome, too, because the genetics experts' best guess is that one of them carries the gene mutation that causes Down in his or her reproductive cells.
One option for Kevin and Shawnie is in vitro fertilization. Her eggs would be harvested and fertilized with his sperm. Before being implanted, the fertilized eggs would be tested. Only the ones without Down syndrome (if there were any) would be used. The Huffs are okay with this method, even though some hard-core pro-lifers consider it abortion. But it costs at least $10,000 each time you try it.
"That's why we're very undecided," Shawnie says, adding that they might try to adopt a typical child.
Why do the Huffs need a normal kid? Don't they have enough to deal with? Shawnie says that with Tia and Tyler, she knows she'll never have children who abuse drugs or come home late or throw temper tantrums (actually, Tia can throw a pretty impressive tantrum already). But Shawnie also knows she'll always be raising Tia and Tyler.
"Probably, our kids will never get married. Probably, we will never have grandkids," Shawnie says.
Kevin wants to put some normal kids into the mix.
"I always think about what society would be like if every family had a child with Down syndrome and raised them at home," he says. "We need to have people to take care of, so that we're empathetic."
And it is true that along with flat noses and heart defects and a life expectancy of only 55, people with Down syndrome tend to be very sweet-natured and happy. Kevin and Shawnie think that would be good for a typical kid to grow up around, too.
But how to get that typical kid?
"The whole ethical decision is just different for us than it is for anyone else," Kevin says.
"We're spiritual people," Shawnie adds.
They pray for an answer.
Now it's time, as my editor says, for me to "come clean." I first learned about the Huffs in a newsletter for a local support group called Sharing Down Syndrome. Always on the hunt for story ideas, I handed the newsletter to my colleague Paul Rubin, who has a way with human-interest stories. He liked the idea, said he'd get to it soon. Making conversation one day with my boss, I mentioned the Huffs.
"You have to do that story," my boss said. "You understand it better than anyone."
"Well, yeah," I replied. "That's why I don't want to do it." He harrumphed, but he didn't bug me about it again. I thought about it for several months, then finally decided my boss was right (I hate it when other people are right), and I took the story away from Paul (sorry, Paul).
And so now I'm going to do something I've never done, in my nearly 12 years at New Times. I'm going to write about myself. I cringe as I write that, because Paul and I and our other colleagues have, over the years, made great fun of other writers and editors who have shared private details of their lives in the pages of New Times. But there's no other way to tell this story, because if I'm going to tell it, you're going to need to know that I have my own baby with Down syndrome.
Actually, Sophie's not a baby anymore, she's a year and a half old. But she still seems like a baby. She doesn't walk or talk or even crawl on all fours, although I bet she could commando crawl her way across Fallujah. Last week she figured out how to press the buttons on her musical toys, and she sways to the songs, beaming.
My husband and I have a 3-year-old, too, a little girl named Annabelle who does not have Down syndrome. Both girls are a joy, sometimes in different ways. When we went to San Diego this past summer, Annabelle refused to step foot on the beach, announcing, "It stinks!" (She's right.) Sophie sat in the wet sand, cracking up as the water lapped her toes. She let me make her into a dribble castle.
It's ironic that I had a baby with Down syndrome, since I am not a very nice person. I have a button on my bulletin board at work that says, "If at first you don't succeed, you'll be a loser and a burden on society for the rest of your life."
I've had to put my nice-guys-finish-last philosophy aside -- at least at home -- because Sophie is without a doubt the happiest human being I have ever encountered, and just being around her makes me feel good. If I could bottle her joy and sell it, I would be very wealthy.
That doesn't mean I'm totally adjusted to the idea of having a retarded child. The other evening, at bedtime, I was reading Sophie a book called Moo, Baa, La La La, and my eyes landed on a book I had put on her shelf before she was born, the young adult classic A Wrinkle in Time by Madeline L'Engle. I was suddenly sad, thinking that Sophie probably will never understand one of my favorite stories.
I have moments like that nearly every day.
Sophie's great. I wish you could meet her. If you did, you wouldn't feel sorry for me. Not that I haven't spent a lot of time, since she was born, feeling sorry for myself.
Just the other day, my husband looked at me and said, "Having a kid with Down syndrome isn't such a big deal."
We were sitting on the family room couch on a Wednesday afternoon, home together on a workday because Sophie had just had surgery to Roto-Rooter her clogged tear ducts and to check her hearing. Normal kids have clogged tear ducts, too, but babies with Down syndrome have smaller openings (small nasal passages, ear canals, tear ducts), so they suffer from the problem more often. Ditto with the hearing. Small ear canals mean more of a likelihood for infection and fluid buildup.
This was not Sophie's first surgery. Like Tia Huff, Sophie had open-heart surgery as an infant. The surgery was successful, and Sophie's fine, but I don't think I'll ever recover from the two weeks in pediatric intensive care or the fact that I had to shove a feeding tube up my baby's nose and into her stomach when she was two months old. After that, for several months, Sophie wore a device that looked like a football helmet to reshape her funny-looking head. The helmet rubbed a raw, bloody patch on Sophie's scalp, like the hot spots our golden retriever gets. It was a mess. Like the Huff kids, Sophie gets a lot of therapy. She has physical therapy three times a week, occupational and speech therapy once a week each, and she's even got a therapist, called an "early interventionist," who teaches her how to play. She has this horrible thing called a stander that we have to strap her into, so she can one day bear weight on her feet by herself.
All of which is to say that, yeah, having a kid with Down syndrome is a big deal. I wouldn't trade Sophie for the most typical kid in town, but I know that I don't want another child with Down syndrome. I don't want to put another child through the health risks, and frankly, I'm not sure my mental health could take it.
I also know, with equal certainty, that I could never terminate a pregnancy simply because the fetus had Down syndrome. I couldn't even turn away a fertilized egg with Down.
Frankly, I'm not sure I want a third kid. I vomited my way through every single day of my two pregnancies. But my husband really wants one -- he's always wanted three kids -- and since they haven't yet perfected the synthetic uterus that would allow men to bear children, we're in negotiations.
Before Sophie, the only thing I knew about Down syndrome was that it's called "Down syndrome," not "Down's syndrome," because once, years ago, I overheard a heated hallway debate at work between two editors. I never watched the show Life Goes On. I ignored the retarded clerks at the grocery store; they made me nervous and sad.
I constantly imagine that bad stuff is happening to me. Always have. I started preparing for the end of the world when I was about 4. I'm the woman sitting next to you on the airplane clutching the armrests, preparing to die. I am positive that, right now, as I sit at my kitchen table at 4:50 a.m. writing this, a rapist will sneak through the back door.
But I never imagined Sophie. After an early miscarriage and a round of Clomid, my husband and I got pregnant with Annabelle. We freaked out when a blood test during pregnancy revealed that the baby might have spina bifida, but an ultrasound eased our fears, and everyone talked about how that blood test (called an AFP) always comes back false-positive, particularly if you're having a girl. So when I was pregnant with Sophie and that same test came back a little high on the Down syndrome scale, I wasn't too worried.
The nurse practitioner from my OB/GYN's office called to say the blood test showed that my chances were 1 in 214 for having a baby with Down, as opposed to 1 in 219, the average for a woman my age, 36. She wanted to schedule an amniocentesis -- a test in which a needle is used to remove amniotic fluid from the uterus -- right away.
In just the two years that have passed, prenatal genetic testing has advanced to the point that you can find out in the first trimester with pretty good certainty whether your unborn baby has Down syndrome. But an amnio is done well into the second trimester. At the point I was at, I would have been considering a late-term abortion if I had decided to end the pregnancy. And there's a risk of miscarriage with an amnio.
I've always been pro-choice, but I've never had to choose. I could feel Sophie kicking inside me. I called my husband. His answer was immediate.
"Why would you get an amnio?" he asked. "It's not like you'd get an abortion just because our baby has Down syndrome."
And instantly I knew he was right.
I didn't think about it again until I looked around in the recovery room -- groggy from the extra drugs I'd demanded after my C-section -- and my husband was asking the nurse if she thought Sophie looked like she had Down syndrome. It was hard to tell from her squishy newborn face.
The nurses on the maternity floor debated the matter for an entire day while we waited to see the pediatrician, a man we'd never met. He popped into the room and immediately calmed us down. "I know the nurses say you're worried about Down syndrome, but I'm all but certain she doesn't have it," the doctor (who had come highly recommended) said. "We can do a blood test, if you want."
Sure, why not? They poked Sophie's head and told us it would take three days to get the results.
The good news, the pediatrician added, after putting his stethoscope to Sophie's tiny chest, was that her heart was definitely okay. And then he left.
Three days later, the pediatrician was back. He wouldn't meet our eyes, either. He told us Sophie had Down syndrome, and then he left.
My husband and I sat on the hospital bed, quiet, not looking at each other. Finally, I announced that I had ruined our lives. I opened my mouth and sobbed like I had never sobbed before. I felt like my whole body was crying, especially my brain. I don't think I've ever cried like that before or since.
I looked at Sophie, asleep in her hospital-issued plastic baby bed, swaddled in a striped blanket. She looked a little jaundiced but, otherwise, so normal. We picked up the phone and called our parents.
I think all the time about what my mother said, shortly after she heard. "I'm not worried about Sophie," she said. "I'm worried about Amy."
When Annabelle was Sophie's age, my husband and I used to fight each other to get to her crib each day, to "steal the morning smiles." She was a happy kid, but it's not like she smiled all day. Sophie does. Go to the bathroom and she'll greet you on your return like you're just back from the grand tour of Europe, giggling and waving and blowing kisses. Sophie's so fucking happy that it pisses me off that you need to have a genetic disorder to be that happy.
My mother was right. (There it is in print, Mom, the words you've always wanted to see.) Down syndrome has been way harder on the rest of us than it has been on Sophie, at least so far. I hope it always stays that way.
My sister had another really good line when she heard about Sophie. She said, "Well, at least now Amy will always have someone to go get a pedicure with."
My husband and I are both journalists, both used to telling other people's stories. But neither of us had ever really had our own story, 'til Sophie.
We had opposite reactions. Even before the blood test confirmed the nurses' suspicions, my husband was in the hospital's medical library, learning everything he could about Down syndrome and then about Sophie's heart defect, when it turned out the doctor was wrong about that, too. (Boy, that doctor sucked.)
He didn't want to write about it, he just found information comforting, even if it wasn't what he wanted to hear. My husband knows so much about Down syndrome that he taught the genetics counselor a few things, when we finally got in to see one. Sophie was three months old. I sat through the session in a fog, barely focused on the wormlike chromosomes on the laminated sheet, as my husband rattled on about trisomy 21 and nondisjunctive Down syndrome.
I just wanted to know, would Sophie have curly hair like the rest of us? (Turns out, no.)
I'm not that shallow, really. If your kid had Down syndrome, I could research and write the heck out of your story. I'm not so good at science, but trust me, I could figure it all out and then write a way-too-long piece about it, packed with details. But when it came to Sophie, I was lost. Friends gave us books -- particularly Expecting Adam, written by a woman who lives here in Phoenix -- and my husband devoured them while I watched Baby Einstein videos with the kids and finished decorating the nursery.
I was totally cool with Sophie, as long as I was with her, taking care of her, making doctor appointments and going through the labyrinthine process of getting her therapy through the state. I could deal with whatever Sophie needed that day, but I couldn't think about the future at all.
I got pretty good, pretty fast, at finding Sophie what she needs. We met one family with a little boy with Down syndrome, and that mom was a great resource for doctors and therapists. But we didn't join the local support group. When Sophie was about two weeks old, a couple of work colleagues came over with one of those buckets of margarita mix and a bottle of wine. Okay, it was a Wednesday night, and I had just had a baby (not to mention a Percocet and a handful of Advil about an hour before), but we've always prided ourselves on a nontraditional lifestyle. I used to joke that Annabelle's first word would be "motherfucker." I wasn't far off.
We sat around the dining room table drinking and laughing, and the doorbell rang. My husband had forgotten to mention that he'd told Gina Johnson, the woman from the support group, that she could stop by. In his information-gathering zeal, my husband had called Gina. She was very encouraging and helpful. She wanted to meet us. She came in loaded down with books and a ceramic angel. Gina's grown son David has Down syndrome, and she showed us a big picture of him at the prom. ("Well," I said later to my husband, "you and I didn't go to our proms. That's something.")
I couldn't look at the picture of the sweet boy in the tuxedo, beaming next to the girl who probably felt sorry for him. When my drunk colleague announced to Gina (who happens to be a devout Mormon who says things like, "I want to smooch on your angel baby") that her own 15-year-old daughter was an "asshole," I did my best to end the evening there.
I was stuck. I didn't want to be with the touchy-feely support group people, but I felt uncomfortable around my usual crowd. And they felt awkward around me. My favorite story about that involves one of my favorite people, Laurie Notaro. You might have heard of her; she's written some books. In print, she's one of the meanest people I've ever known, and I love her for it. But how do you tell someone like that that your kid's messed up? When Sophie was a few days old, I called Laurie.
"Look, I have something to tell you," I said, after we'd dispensed with the pleasantries about oozing scars and gas pains. I took a deep breath. "Sophie has Down syndrome."
I was ready for the silence, then the voice filled with tears. "Oh, Amy," she said. "Oh. I am so sorry." More silence. We talked about Sophie's immediate health problems, then we talked about Laurie coming to visit. She wanted to know what I wanted from Barb's bakery. Then we hung up, pretty quickly.
I didn't think much of it. I'd had several of those conversations that week. To me, it wasn't inappropriate to express sorrow about Sophie. I was sorry, too. Worried about her health and whether she would have a happy life. Frankly, I was worried about whether I would have a happy life. I checked Laurie's name off the "to tell" list and made the next awkward call.
But when I got home, there was an e-mail waiting.
"Listen," Laurie began. "I'm really embarrassed about our conversation this morning about Sophie. I didn't know what to say. And I've been thinking about her and you all morning, and I just want you to know that I said the wrong thing. I mean, when I said that I was sorry about Sophie and Down syndrome, that just came tumbling out. Since then, I've realized it was a stupid thing to say, because Sophie is going to be fine. She's just going to be Sophie."
Laurie continued, saying what good parents my husband and I would be, what a good big sister Annabelle would be. And this is how she concluded:
"Now this may not be an appropriate story for right now, I don't exactly know what's appropriate and what's not, but you are one of my dearest friends, and I think you'll understand. My neighbor, Jean, has a daughter, Paula, who has Down syndrome. Paula is about 40 now, she works at the library, and she and Jean are always together. One day, I saw them both walking home from the library, and they were holding hands, but they were swinging their arms back and forth. And I watched them for a while, and I thought, 'Wow, when's the last time I held hands with my mom? Probably not since I was five, six. When's the last time I held hands with my mom like that? Probably never. And I remember thinking, Jean is so lucky to have Paula, and Paula is so lucky to have Jean. It seemed to me at the time that Jean got all of the wonderful, little tender moments of being a mother, and she just got to hold onto them a little bit longer than other mothers.
"Okay, that's enough of an emotional outpouring [from] this black-hearted girl. But know that I'm here, know that I'm thinking about you, and know that I can't wait to meet our sweet Sophie. I bet she's just a doll."
A couple months later, Laurie told me that, at about the time Sophie was born, she was working on the final galleys of her third book, I Love Everybody and Other Atrocious Lies, and she went through the book and took out the words "retard" and "retarded." That's a huge sacrifice, since, next to "dork," "retard" is Laurie's favorite word. She admitted that she left "retard" in once because it was in a direct quote, and it really fit. I actually found it twice, when I read the book.
I can't imagine a better tribute to Sophie.
When I decided that I wanted to write about the Huff family, I e-mailed Gina Johnson from Sharing Down Syndrome to ask for contact information. She was gracious, and invited us to the Buddy Walk, the organization's annual fund raiser. I didn't want to go. Sophie is beautiful and fun and sweet (and I am personally convinced that she is very smart), but I wasn't ready to face what she'll be like when she grows up. There were certainly going to be adults with Down syndrome at this thing. I imagined a whole throng of them, walking toward me.
But I figured I needed to go to the walk as part of the story. So I did. It wasn't so bad, although Tyler was sick and the Huff family didn't make it. I saw only a few adults with Down syndrome. Mostly, there were little babies, like Sophie. Before the short walk, a DJ played some really cheesy dance music, and a bunch of people, including Gina Johnson's son David, got up and danced. I watched them and thought about how I would never dance like that unless I was very, very, very drunk. They were having a lot of fun.
And so began my Down syndrome education. I finally dug up a copy of Expecting Adam, and was able -- through tears -- to read it, telling myself, again, that it was for this story. As part of my research, I spent a long time with the Huffs' genetics counselor, and this time I actually paid attention and took notes.
After meeting with the genetics counselor early one morning, I went home to play with Sophie. I looked at her, and all I saw were chromosomes. I had to shake my head hard and look again.
Let me try out my new knowledge:
DNA (deoxyribonucleic acid) is a grouping of molecules that hold the instructions for operating the body. These DNA molecules link up in a twisted ladder shape called a "double helix" to form strands that are genes. These genes are stored in chromosomes, which are tight packages of protein and DNA strands. Each cell in a human being is made up of 46 chromosomes -- 23 come from the mother, 23 come from the father. For unknown reasons, sometimes an error occurs at the time of fertilization, and instead of 46 chromosomes, there are 47. This can happen with other chromosomes, and in those cases the pregnancy usually doesn't progress or a baby is stillborn. Where live births are concerned, the error most commonly occurs with the 21st chromosome.
The 21st chromosome happens to be very short, which means it contains less DNA material than other chromosomes. That might be why people with Down syndrome survive. In the case of trisomy 21, the name this kind of Down syndrome is called (trisomy means "third," in case you hadn't figured that out), every single cell in a person's body is different.
That's pretty mind-boggling. My husband likes to call Sophie our little science experiment, which he means in a much more endearing way than it sounds. When you think about it, it is pretty amazing that a person can have a totally different genetic makeup from normal humans and still function. Turns out that Down syndrome has been found in great apes, which means it's been around longer than the earliest humans. It wasn't until 1866 that a physician named Dr. Langdon Down officially described his collection of findings. (People often remark that it's funny that it's called Down syndrome, since people with it are often -- but not always -- very even-tempered and happy.) In 1959, the genetic cause of Down, the extra 21st chromosome, was first identified.
Basically, you can get Down syndrome in one of two ways. You can get it from a parent who is a carrier, or you can get it the more common way, in which a genetic mutation occurs spontaneously at the moment of conception. No one knows why that happens, but it's true that the older the mother is, the likelier the chance.
Sophie has the latter kind, which is called nondisjunction trisomy 21. That's not surprising, since I was older when I had her and we already had one typical child, which would presume it's unlikely that my husband or I are carriers.
Braxton, Tia and Tyler Huff were all born with nondisjunction trisomy 21. That's unusual, partly because Shawnie was only 25 when she started having kids, and partly because "nondisjunction" means nonrelated. Having one child with that form of Down syndrome increases your chances of having another to 1 in 100. Still pretty good odds, so the Huffs didn't think much of it when they got pregnant with Tia. Then an ultrasound revealed that she had a large hole in the lower chamber of her heart, a defect commonly associated with Down syndrome. The doctors increased her chances to 50/50. Shawnie says she was worried before Tia was born that she'd be disappointed if her daughter was born with Down, but that when the time came, she wasn't upset at all.
In fact, in a way, the Huffs were relieved.
One of the hardest things about losing Braxton, Shawnie and Kevin agree, was losing the community that had grown around him and around them. They were very active in Sharing Down Syndrome, and even as young and as ill as he was, Braxton had several therapy sessions a week. Suddenly, the doctors and therapists were gone, and things got awkward with the support group. That was horrible, because the Huffs don't have much family in town, and already they had grown apart from their old friends.
Shawnie has a friend on the East Coast. The two were so close, she planned to name Braxton after her friend's young son. When Shawnie called to tell her friend that Braxton had Down syndrome and was ill, Shawnie recalls that the friend assumed that the Huffs wouldn't name Braxton after her healthy child. (They still did.)
When Braxton died, Shawnie says her friend told her she was lucky.
"It's weird for us to talk to other people, because we don't fit into their world," Shawnie says. Now she and Kevin are more active than ever in Sharing Down Syndrome and also host a "good grief" group for parents who have lost a child with Down syndrome.
The Huffs are an anomaly even in the Down syndrome community, because they've had three children with it. Rick Wagner, their genetics counselor at the Arizona Institute for Genetics and Fetal Medicine in Chandler, has worked in the field since 1978 and has never seen a case of a family having three children in a row with Down. Wagner says he thinks that either Shawnie or Kevin has mosaicism, in which the cells mutate after conception. That means that only some of the body's cells are affected, rather than all of them. In this case, Wagner believes, either Shawnie's ovaries or Kevin's testes are affected. They've had blood tests, which reveal nothing; even a biopsy might not reveal the cells, since they're not present everywhere, Wagner adds.
In any case, the Huffs don't really want to know.
With Tia's heart fixed and Tyler so far having suffered nothing worse than a really bad case of croup, life in the Huff household is relatively normal -- as normal as life can be when you have to expect that your kids won't learn how to do anything (from drinking from a bottle to sitting up to saying "Mama") without great assistance.
Four mornings a week, state-paid therapists come to the house to work with both Tia and Tyler, and Shawnie is the ultra-efficient mom, balancing sleeping Tyler on her shoulder while helping to arrange an intricate obstacle course of musical toys and benches for Tia to use with the physical therapist.
Saturdays are just like anyone else's day off -- a recent one included a trip to the Phoenix Zoo, where the Huffs realized they'd left the stroller in the other car, rented one, but still wound up chasing Tia around the zoo. She insisted on spending most of her time petting the goats, then fell asleep in Kevin's arms.
On another Saturday, Tia's watching Barney (her favorite) on the television in the playroom of her family's Gilbert home. The house is new and clean, and so is the neighborhood, which features a sparkling white Mormon church a few steps from the Huffs' front door. Tyler plays on the floor, then naps. Tia bounces in and out of the room, jumping up onto mom's lap to point out family members in a scrapbook filled with photos of Braxton. "Daddy! Mommy! Baby!" Tia says, her speech hard to decipher if you don't know her well. "No," Shawnie corrects her gently, smiling. "Big brother!"
It's true that Braxton and Tyler look a lot alike. Sometimes Kevin slips and refers to Tyler as Braxton. On this particular day, Tyler is wearing a blue-and-green-striped onesie with Tigger on it. On a bookcase in the Huffs' living room, there's a photograph of Braxton wearing the same outfit.
Kevin and Shawnie married seven years ago. It's his second marriage (the first was childless) and her first. They met at the Mormon church's ward at ASU, where Shawnie was finishing nursing school. Kevin works in electrical systems maintenance for Salt River Project. He was raised in the Valley and she grew up in Prescott, but they figured out that when she was in fourth grade and he was in 10th, they'd been at the same Donny and Marie Osmond festival. It was meant to be.
Both are the middle kids in families with five children, so they figured they'd have four or five kids, too. Shawnie was only 25 when she got pregnant with Braxton, and there's no history of Down syndrome in either of their families, so they never thought about genetic testing, which is usually not recommended for women under 35. It is recommended for a woman who has already had one baby with Down syndrome, but Shawnie did not get an amniocentesis or the other tests that could have determined if her second and third children would have genetic disorders. Shawnie was already certain that she would not terminate the pregnancies.
They'd been through so much with Braxton, she explains, that she couldn't imagine risking a miscarriage by having an amnio, just to satisfy her curiosity.
When Braxton was born, the fact that he had Down syndrome was the least of the Huffs' concerns. An ultrasound late in pregnancy showed that his esophagus wasn't fully developed. As soon as he was born, the nurses took him to a baby warmer and someone tried to stick a tube down his throat. It stopped. It's a rare health problem associated with Down syndrome, and a serious one. Shawnie had not had an epidural, and she was exhausted. Then she started hemorrhaging. Kevin went to intensive care with Braxton. They gave the baby a taste of a lemon swab, used to clean out a newborn's mouth, and Braxton coded.
Shawnie was already in surgery. When she came to, Kevin had shot some video of Braxton, which they watched. Braxton's first operation was less than a day later, to put a feeding tube into his stomach. He looked healthy, and Kevin asked the doctors, "You can fix this, right?"
The doctors just looked at him.
When he was a month and a half old, Braxton had a six-hour operation to connect his esophagus to his stomach. Halfway through the procedure, the surgeon came out and said it wasn't going to work. Ultimately, it did. Braxton had his first bottle ever when he was almost two months old, and came home a week later. His first burp was very exciting. So was his first Cheerio, even if it was only a half.
His entire life, Braxton had such bad reflux that he had to sleep at a sharp incline, Kevin says, holding his arm at an uncomfortable-looking slant. When he left the hospital, the prognosis was good. The Huffs got Braxton signed up for therapy through the state, and started living a relatively normal life.
But there was scarring where the connection was made between the stomach and esophagus. And Braxton was prone to congestion, which meant that he couldn't eat much, which made the small connection start to close up. Every three weeks, he needed his esophagus dilated.
In between, Shawnie says, Braxton was a happy little boy. She stares at the carpet as she talks, dry-eyed. Both she and Kevin keep it together, the whole time, even though this is a tough conversation.
"He always had issues, but he was happy, so happy."
A week after his 1-year immunizations, Braxton started running a high fever -- 102, 103. He was back and forth to the doctor, tested for meningitis, x-rayed. The pediatrician said it was the flu. They went to the doctor on a Tuesday; he sent them home.
"Wednesday morning when we went to go check on him, he was dead," Shawnie says. The autopsy report said pneumonia.
Tia was born two years later.
"We said, yep, she looks Asian," Shawnie recalls. Both she and Kevin laugh. "She was pink, she was crying, she was beautiful."
Tia came home two days later. When she was walking, her parents started talking about having a third child. It never really occurred to Shawnie or Kevin that Tyler might have Down syndrome, too.
But they were okay with it.
"People with a child with no health problems have more problems with the Down syndrome thing," Shawnie says.
Both Tia and Tyler are doing so well. Tyler is practically off the charts, weight-wise, and at eight months is sitting by himself and looks ready to crawl. Tia walked at 18 months (very early for a child with Down) and races around the house, using the piano as a climbing wall. She knows more than 50 signs, and she'll start preschool in January. She loves to "put your nose in" during the "Hokey Pokey." The whole family just got back from Disneyland.
Before I leave, Kevin wants to show me something. He's the one who found Braxton that Wednesday morning, and he has had the toughest time dealing with Braxton's death. As part of the healing process, he made a little movie of pictures and video of Braxton. There are dozens of images of Braxton, from birth on. In most of them he's smiling, and I'm glad to see the video, because hearing about his life, it didn't sound like that year was much fun. But it was. There's Braxton in the bathtub, dressed as a lion for Halloween, wearing a Santa hat, crying on Santa's lap. Laughing and smiling with his family. In all of the images, Braxton's got an ugly black string hanging out of his mouth, a reminder of all of his health problems. But the funny thing is that, looking at all of those images, you don't notice at all that he has Down syndrome.
My favorite image is a video clip of Kevin and Braxton. Braxton's on the changing table, and Kevin's kissing his feet again and again, making his son laugh.
By the end of the movie, we're all in tears.
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