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All in the Family Local families talk special needs challenges

Hope Springs Eternal

Kayleigh Hope Klatt at 2-years-old in June 2016.
Kayleigh Hope Klatt at 2-years-old in June 2016.

Born 94 days early and weighing not even a pound, Kayleigh Hope Klatt wasn’t expected to survive the hour. The fact that she is now a sassy, happy-go-lucky 2-year-old who loves to play outside and makes her parents read “Fun Dog, Sun Dog” several times a day was very nearly inconceivable.

The first several months of Kayleigh’s life were a constant battle to keep her alive—and terrifying for her parents, Bolton Hill residents Nicole Bent and Jacob Klatt. Kayleigh is the smallest baby ever delivered in Maryland. Called a “micro-preemie,” she was smaller than her mother’s hand when she was born. She was so tiny—and her lungs so underdeveloped—that doctors weren’t sure they would be able to get the intubation tube in, the apparatus that would allow her to breathe.

Bent’s pregnancy suffered from intrauterine growth restriction, a condition where the baby doesn’t grow to normal weight while in the womb. They consulted several specialists, who told them 500 grams (about a pound) was the magic number. At that weight, there was a much higher chance of survival because her airway would most likely be wide enough for the smallest intubation tubes.

And yet, it wasn’t looking good, and doctors didn’t think the baby would ever make it to that magic number. Having already lived through one baby dying from the same issue, Bent didn’t know if she’d be able to do it again.

“Basically, we were just preparing for her death,” she says. “It was just terrible because this is the second time I’m going through this. Basically, we were planning her funeral.”

Kayleigh one day after birth.

But Klatt dealt with the stress and fear a different way—by doubling down.

“You say ‘we,’ but I never did,” he tells his wife. “I always had that optimism. I never let all the things [the doctors] were saying deter me. I just wouldn’t accept [the alternative].”

As the pregnancy started to put too much strain on Bent’s body—she was admitted into the hospital with preeclampsia and liver and kidney failure—the doctors delivered Kayleigh on New Year’s Day of 2014 via cesarean section.

“They pulled Kayleigh out, and she was completely lifeless when she came out,” Klatt says. Doctors rushed her to the incubator and, for several minutes, attempted to get her intubated—a challenge since she was under the 500 grams weight. It was a veteran neonatal intensive care unit nurse practitioner not originally scheduled to be working that night who finally succeeded.

“Whatever she did, she got the tube in and Kayleigh let out a cry,” he says. “As small as she was, she let out a cry. And the doctors were still sewing Nicole up and they were like, ‘Did you hear that?!’”

It was nearly a year, three hospitals, multiple surgeries and numerous resuscitations—sometimes twice a day, in the early months—before Kayleigh was deemed healthy enough to go home. She came home with a tracheostomy (a hole in her windpipe to allow her to breathe), a feeding tube and was still breathing on a ventilator.

Kayleigh in May 2014 before surgery.

Since then, Kayleigh has been learning how to be a typical toddler, with almost daily therapy (physical, occupational, speech or feeding therapy) from Mt. Washington Pediatric Hospital, Kennedy Krieger Institute and other city programs. Kayleigh receives almost all of these totally free, thanks to how the state of Maryland and city of Baltimore fund its early intervention programs—services Bent and Klatt can’t recommend enough for how effective they’ve been with Kayleigh.

The goal is to have her eating orally on a more regular basis—she still gets a majority of sustenance from her feeding tube—and have her breathing well enough on her own to remove the trach within a year. So far, Kayleigh is exceeding all expectations.

“Everybody is extremely happy—all her medical professionals—with the progress because we thought she’d be on some type of support for 5-10 years,” Bent said. “So she’s way ahead of the curve.”

Despite—or perhaps because of—having to fight for her life in the beginning, Kayleigh is as precocious and adorable a 2-year-old as you’ll meet. She demands attention, loves to listen to music, always wants to go to the playground and, even though she isn’t speaking yet, has mastered a collection of sassy faces and gestures that communicate her point just fine, thank you very much.

“Every day, I look at her in amazement. Like, every day,” Bent says. “… She surprises me all the time. Like, ‘Oh, you can do this?’”

Klatt and Bent are slowly adjusting to their new normal of having a high-energy toddler running around. She can be naughty—like any 2-year-old—but for parents still so happy at how far she’s come, they’re only now getting to a point of disciplining her regularly.

“Because she went through so much, we kind of didn’t discipline her a lot,” Klatt says. “She’ll do stuff, just, like, being bad—she’ll go and unplug the TV or something. And you want to discipline her, but at the same time you think, ‘Oh, she’s our fragile kid.’”

As she gets older and continues with her therapies, Kayleigh is expected to outgrow a lot of her major medical issues. The future is never certain, of course, but there’s no doubt her fighting spirit will prevail.

All the pain, the stress, the fear of losing her was worth it for Kayleigh’s parents. After all, Bent says, “she’s our everything.” —H.M.

Ahead of the Curve

Syndey Marsh, 16, with her mom, Christel, in June 2014.
Syndey Marsh, 16, with her mom, Christel, in June 2014.

Puberty is a time fraught with hormones, angst and, often, an intense desire to be liked, accepted and validated. For Reisterstown pre-teen Sydney Marsh, however, her day-to-day thoughts were not typical teenage fare. Instead, she worried about her spine.

In August of 2010, when Sydney was 10, her pediatrician noticed abnormalities with her back and had her book a follow-up appointment. With the x-rays came bad news: Sydney had scoliosis.

Scoliosis is an abnormal curving of the spine most often showing in girls aged 10-12. Sydney’s “curves” formed an “S” shape, which is the most common. There is a wide range of how scoliosis can affect people. Curves can be relatively minor and solved through bracing the spine, or they can be much more significant—or progress to that state—and eventually require surgery.

When Sydney was diagnosed, her doctor recommended a brace, which she was supposed to wear for 23 hours a day. Getting fitted for that first brace was a truly awful experience, Sydney says. Her mother, Christel Marsh, hated it almost as much.

“Getting fitted for [that brace] was awkward and, as a parent, very emotional,” she says. They didn’t know anyone else going through something like this, which made it all the scarier.

All of a sudden, scoliosis seemed to take over her life, says Sydney, who will turn 16 this month. She had to buy new clothes to fit around the brace—athletic, sweat-wicking undershirts for under the brace and looser shirts and elastic pants to fit over it. Her self-confidence took a dive, and she avoided telling anyone as much as possible.

“When I did tell people, they definitely treated me in a different light,” she says. “And that’s what pained me the most and why I didn’t tell people for a while. They just looked at me like I was—I don’t know how to describe it—broken.”

Sydney at 9 before diagnosis.

“It was a very self-conscious experience at school,” she adds. She had to have some adjustments made, like help removing the brace when going to the bathroom, modified gym class, the ability to go to the nurse’s station and keeping schoolbooks at home, among other things.

The whole situation was very isolating—for both Sydney and her family. It felt like no one really understood the challenges and realities they were dealing with on a daily basis. Eventually, they found Curvy Girl, a support group, of sorts, for girls with scoliosis and their families.

It seemed like a perfect fit. The only problem: The closest chapter was in southern Maryland, about a three-hour drive away. So, with help from a pediatric physician’s assistant at Johns Hopkins, Sydney started up her own chapter, based in central Maryland, a year after being diagnosed herself.

They finally had the support community they had craved—a place to trade tips and advice with other families—and this summer marks the chapter’s fifth anniversary.

But as their support system improved, Sydney’s scoliosis did not. She’s the first to admit that she was not as consistent with her brace as she could have been, but “it felt like a cage,” she says.

And Christel, seeing how unhappy it made her daughter, often didn’t insist. By the time she was in 8th grade, Sydney’s curves were bad enough that surgery was on the table. Surgery for scoliosis often involves fusing some vertebrae together, placing rods along the spine to keep it straight.

As Sydney was not one to prolong the inevitable, the surgery was booked. The one invaluable thing they did to prepare for the surgery was take a vacation with the whole family, Christel says. It allowed them to forget for a while and just have fun.

With having the surgery her last year in middle school, Sydney hoped to go into high school her freshman year fully “normal” and get to start anew.

“My whole goal for high school was just trying to fit in,” she says, “trying to be normal, trying to just forget about [the scoliosis], trying to push it away and have no one know about it—new, fresh high school. I was trying to just be me.”

And, basically, it worked. Sydney entered high school braceless, but with the addition of two rods and 16 screws in her back, keeping her spine—and the newly-fused vertebrae—in place.

It wasn’t easy, but Sydney slowly started to regain her coveted sense of normalcy. Last summer, she joined the Junior Zoo Crew at the Maryland Zoo in Baltimore because she loves animals and hopes to work with them someday. It was the most active she had been since being diagnosed five years ago.

She is doing the zoo program again this summer. And, despite the occasional setback—she recently sprained her back and was on intense painkillers as it healed—her goal is, as always, to live her life as normally as possible.

That doesn’t mean she’ll be able to ignore the scoliosis, not with the hardware in her back as a constant reminder. But, it doesn’t seem like she wants to. For one still young, she shares her story with the wisdom of knowing her experience can make a difference for someone else—as it already has through her local chapter of Curvy Girl.

“I feel like the goal now is to share what we know,” Christel says. She, like Sydney, wants other families to have the support and resources they didn’t.

Sydney agrees, “It feels good to be able to help others because we weren’t helped ourselves. Now, we’re able to help others so they don’t have to deal with the same thing we went through.” —H.M.

Out of the Ordinary

Grant Reinaman, now 11, was diagnosed with autism at age 2.

In times of difficulty, those offering comfort often default to the same refrain: “It could be worse.” The phrase is the perfect storm of pessimistic optimism, acknowledging pain while simultaneously offering hope and perspective—and, in most cases, it’s true. But for some in the special needs community, worse might mean … better. Or, at the very least, more straightforward.

Such is the case for Grant Reinaman, an 11-year-old lover of video games and animals from Reisterstown in Baltimore County. Grant was diagnosed with autism around the age of 2, but his path has been inconsistent since the early prognosis.

“Grant isn’t even a typical atypical child,” says his mother, Angela Reinaman. “He’s been on the spectrum and off the spectrum; his abilities wax and wane. We’re always trying to understand what’s going on with him, and we still can’t quite tell—in some ways he’s a typical child, and in other ways he’s 3-4 years behind developmentally.”

Socially, for example, Grant has struggled. Though he and his brother are “best buds who always have each other’s backs,” according to Reinaman, Grant has only had one or two good friends since beginning school—though they have been good ones. (Despite his shyness when speaking to me, he did tell me about his best friend, Gary, who “lets him goof around.”)

In his academic studies, however, Grant had remained at grade level until very recently.

“He’ll seem to lose education for a while and then get it back. He just lost 2-3 grade levels of reading, and it didn’t seem to be caused by anything—no seizures, no nothing,” Reinaman says. “The school was willing to move him forward, but why would I push him into fifth grade? Wherever you have your child, you need to be flexible with them.”

This flexibility has been especially important when it comes to medication, one of the toughest challenges in managing Grant’s condition.

“Because he’s such an atypical child, all the typical medications don’t work right, and all the ones that should work don’t. There are meds that didn’t work for him at all when he was younger, but may work now. That has been a big struggle for us,” Reinaman says.

It is in this area, she said, that the inconsistencies of her son’s condition are the most problematic. While Grant has said to her that he knows his “brain doesn’t work right,” he actually denies having autism due to his experiences with classmates whose conditions are much more acute.

“Not that I wish this at all, but if [his condition] was more severe, it would be easier to figure things out. But because he is so different, I need to make sure he’s not overmedicated while still trying to find something that can help him. I’m not totally pro- or anti-medication, but I believe that if it helps your child to live a better life, to be able to participate in more, it ultimately builds their self-confidence.”

To combat the difficulties of the medical process, Reinaman has taken it upon herself to learn as much as she can about various conditions and medications—something she urges all parents of special needs children to do.

“I would encourage any parent to not just take the first diagnosis as the way things are. You know your child better than any doctor does,” she says. “I always question.”

At the same time, Reinaman says she has been fortunate to have a number of excellent resources at her disposal, such as The Shafer Center, a school for autism, Maryland’s Infants and Toddlers early intervention program and, most recently, the Jewish Community Center and Chatsworth School, which Grant currently attends. (His 9-year-old brother, Zander, attends the magnet school there.)

“It’s a blessing to live in this area,” she says. “The resources are here if you’re open to them—I’m very thankful.”

Though Reinaman is candid about how Grant’s unique condition has been difficult for the family—“I think it does limit our family at times,” she says, adding that Grant’s social development has potentially slowed that of his brother—she is equally straightforward about the positive effect it has had on their lives.

“I have learned so much more about what I’m capable of—and some of my biggest faults—since having Grant,” she says. “He has tested me, but also helped me to understand so much more about being a parent and this unbelievable capacity to love.”

Watching Reinaman giggle with and seamlessly translate for Grant while he tells me about his classmates (one likes Michael Jackson “sometimes,” while another is his go-to Goat Simulator game partner), the love is evident.

As for what the future holds? Reinaman has thought about options for Grant, like Towson University’s alliance with the Hussman Center for Adults with Autism, but is waiting to see how her son’s unique self will develop. On the more immediate front, she hopes to get Grant to explore his love of animals in 4-H or to try out for the Baltimore Saints, a special needs hockey team—but it’s all up to him.

“Like most things with Grant, you don’t tell him when it’s time to do it. He has to decide for himself,” she says. “He will be anything he wants to be.” —K.U.

About Hannah Monicken and Kimberly Uslin

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