Owen Mottie was born with half a heart. That was six years ago. "What we are able to do these days really is amazing," says one of the doctors who helped saved him.
Owen Mottie is a happy, active blond-haired 6-year-old boy with a contagious smile who fights with his sister, plays T-ball and likes the water. His kindergarten year was delightfully uneventful; his reading and math skills are exactly appropriate of others heading into first grade.
Unlike most of his classmates, however, Owen almost certainly will need a new heart someday.
Most parents remember that 20-week ultrasound appointment as a particularly happy time. This is the one where they can find out the sex of their baby if they so choose and listen to the doctor shower compliments on that perfectly shaped little spine and the strong heartbeat. This is the appointment new parents wait for before posting the Big News on Facebook.
Oh, maybe there's a little tinge of nervousness mixed in there because, yes, there's always a chance the doctor might find a problem, but that kind of thing only happens to other people.
Laurel Mottie was one of those other people. She and Don and their then-2-year-old daughter Olivia all went to the ultrasound appointment in their hometown of Chillicothe on that late May day in 2009. It wasn't until Olivia started to get restless and fidgety that Laurel realized the ultrasound technician seemed to be taking a long time to get through the required scans. "When she finally finished, she told me she wanted to check with the doctor to make sure he didn't need anything else, but she really went to tell him she thought something was wrong," Laurel says. "He came in and said he saw something a little funny-'a little funny,' that was what he said-and told me I was going to have to go up to Children's Hospital for a second opinion."
Suddenly and without warning, the feelings of elation and anticipation turned into an almost overpowering sense of dread. She went to see her regular OB/GYN the next day, and that didn't ease her concern. "She told me what the radiologist thought he saw, but she had never seen a case herself and I remember her saying something about a whole side of his heart was missing and that there was nothing they can do," she says. "It seemed so cold and uncaring. I was stunned, and she really didn't help. I left there with more questions than I even came in with and never went back to her."
Laurel says she was "completely without hope" as she prepared to make her follow-up appointment at Nationwide Children's. "Honestly, I didn't know what to even think," she says.
Then she met pediatric cardiologist Dr. Karen Texter.
Texter is among 432 Central Ohio physicians, roughly the top 10 percent, to be listed as a Top Doctor by Castle Connolly Medical, Ltd., a research and information company established in 1992 (see complete list of Central Ohio's Top Doctors that begins on pg. 59).
The positive impact that Texter has had on the lives of her patients is in great evidence in the cards of gratitude that adorn the huge bulletin board in her office at Children's. And even though Owen sometimes gets Texter confused with his regular pediatrician, he is aware of the ordeal he's been through and of Texter's role in getting him through it.
"She's nice," he says. Ask him for some details about what she does for him that's so nice, he puts on that big sheepish grin, looks at his mom for a little help, and proudly points at his chest.
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The long scar down Owen's chest is a badge of courage, a visible display of the fight he's already undertaken to survive through three open-heart surgeries. These days he simply has a couple of medications he needs to take and a twice-a-year checkup with Texter just to make sure everything's fine. Other than that, he leads a pretty normal life.
"What we are able to do these days really is amazing," Texter says. "Babies are being born every day now who never could have been expected to survive even a few years ago. But as we keep coming up with ways to help them, they show all the time just how resilient they can be. Sometimes I look at them and think, 'This is just unbelievable.'"
Texter says she has been a "science-minded person" as far back as she can remember and cannot recall a time when she didn't want to be a doctor. She took every advanced science class available in her Houston-area high school and went to Duke University for her undergraduate pre-med studies in biomedical engineering.
While she was there, she shadowed a couple of cardiac electrophysiologists-doctors who study the electrical properties of the heart-who were working with adult heart patients, treating various types of arrhythmia. She also saw patients with arterial blockages or who were in various stages of heart failure. She had always assumed she would go into cardiology because those were her best classes from the earliest undergraduate semesters, but in shadowing for adult patients, she began to have her doubts. "It was really interesting and the science and the engineering aspects of it were challenging and rewarding, but working with the patients themselves wasn't what I had thought it would be," she says.
When she began shadowing rounds seeing expectant moms and children with heart issues, it was an eye-opener. "It's a completely different set of processes, a completely different way of interacting with patients and their families," she says. "I knew that was going to be a much better match."
Once accepted into medical school at Baylor University's College of Medicine, her feelings were cemented. She briefly flirted with the notion of specializing in obstetrics and gynecology instead of cardiology, but she realized it was only because she was still gravitating toward the babies and their families. Pursuing pediatric cardiology, she realized, she could do both. "It was apparent I had found my passion, and that pediatric cardiology was the best decision for me."
She completed her pediatric residency and pediatric cardiology fellowship training at Texas Children's Hospital in Houston and took special interest in echocardiography in both congenital and acquired heart disease, as well as fetal cardiology.
In 2008, Texter accepted a position at Nationwide Children's Hospital in Columbus, where she now is director of fetal echocardiography at the Heart Center. Along with that appointment, she also is a clinical assistant professor of pediatrics in Ohio State University's College of Medicine.
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It was not long after Texter arrived at Children's that Don and Laurel Mottie sat in the small Cardiac Center conference room waiting, as they said, without hope. In that first meeting, Texter shared the results of the fetal echocardiogram. It was not good news: The little boy Laurel was carrying had a condition called hypoplastic left heart syndrome (HLHS).
Quick elementary science review: The normal heart has fourchambers-two atria and two ventricles. The right atrium receives oxygen-poor blood from the body and pumps it to the right ventricle, which then pumps the oxygen-poor blood to the lungs. The left atrium receives oxygen-rich blood from the lungs and pumps it to the left ventricle, which then sends that blood out to replenish the body's oxygen.
Little Owen's heart was developing basically without the left-side chambers-the parts that pump replenished oxygen-rich blood from the lungs to the rest of the body. Without that left-side pump, the body doesn't get the oxygen it needs, and Laurel's obstetrician was correct: If left untreated, HLHS would be fatal for the nearly 1,000 babies born with the condition each year in the United States.
But the Motties say Texter delivered something else besides a devastating diagnosis. "She didn't come in there with a death sentence," Laurel says. "She had terrible news, yes, but she had such a gentle way of telling us. More than that, she came in with a plan; she let us know we actually had some choices."
"She gave us hope."
"There's just no way you can be ready for something like this," Don Mottie says. "You hear that kind of news and believe me, there's a lot of things that go through your mind. You don't want to just sit and do nothing, but you also don't want your child to suffer or be a pincushion. Dr. Texter came in right away to let us know what we could expect, and, from the start, she's been someone we could lean on. She's more than Owen's cardiologist, she's a family friend."
That was exactly the kind of family interaction that inspired Texter to go into pediatric cardiology. "The first thing I always do is to ask permission to join them, to sit in the family's space and let them welcome me in," she says. "I genuinely feel privileged that families will allow me into their lives at a moment like that, and to ask them for that permission is to remind me to appreciate the reason that they are there, whatever that reason may be. A lot of times, it might be routine for me but it's a real worry for them, and this way I can really appreciate their level of concern. It's a way that I can build a level of trust early on."
She says she makes a promise to every family she meets in her practice: "I am a straight arrow, I am not going to sugarcoat anything, but I also will not make anything sound worse than it actually is," she says. "I am not perfect, but my promise to every single one of my patients is to do my absolute best every single day. I can never make any promises about what will or will not happen, but they can count on me to be at my best and to be completely honest with them."
In her line of work, that is not always easy; sometimes she is not able to bring any hope. But she seems genuinely confused if someone asks her how she's able to remove herself emotionally from the situation, even if only to protect herself. "It is hard. I care a lot about my patients, and on some level I guess it probably does affect me," she says. "But I think the same way the families have an emotional investment, the fact that the investment is mutual keeps things moving forward and I wouldn't have it another way. Things don't always go right, the way you want them to, but when we as a cardiac team always give it our absolute best, when we do everything we can to make sure we don't miss anything, then I can say to the family, 'I am sorry but we really did do our best.' It's never easy, but I don't think I would be able to do my best job if I weren't absolutely invested in the outcome."
With Don and Laurel, Texter was able to tell them that HLHS is a difficult path to travel, no doubt, but manageable. Texter is director of Nationwide Children's Hospital's LAUNCH (Lifetime Strategies and Outcomes for Single Ventricle and Complex Hearts) initiative, which is one of only a handful of programs in North America that pulls together an interdisciplinary team specifically to help HLHS patients and their families deal with the multitude of problems they will face. "In addition to their complex cardiac needs, they frequently have other issues such as feeding, growth and development," Texter says. "They need other subspecialty services-which creates additional layers of care that can be difficult for many families to navigate and coordinate on their own."
The LAUNCH program draws on expertise not only in cardiology, but also in nutrition, nursing and social work, and includes tracking of neurological development as well as physical development.
Texter initiated a LAUNCH teamon the day of Owen's diagnosis to coordinate care through the rest of Laurel's pregnancy, continuing through Owen's delivery and the surgeries that were to follow.
Owen's delivery on October 19, 2009, went smoothly at the Ohio State University Wexner Medical Center, and Laurel even got to hold her newborn son briefly before he was whisked off to the cardiac ICU at Children's. They got confirmation shortly thereafter that he was indeed a candidate for the surgical protocol that would delay the biggest part of his reconstruction for six months so he could grow and get stronger first.
Basically, the treatment is a series of surgeries that redirect the blood flow around the missing pump. Surgeons reroute the blood flow so that the oxygen-poor blood skips that first trip to the heart and goes directly to the lungs first for the gas exchange, then heads to the heart so the good pump can send it out to the body.
The initial surgery came when he was about 36 hours old-too much blood was flowing to Owen's lungs and the cardiac team worried they would be damaged unless they could stem the flow a bit. The big one, the comprehensive Stage 2 (or "Norwood" surgery), came at 6 months, when Owen was on the table for nine hours-seven of those on the bypass machine. The third and final operation was June 5, 2013-four years to the day after the initial meeting with Texter-which again put Owen on the bypass machine for the final rerouting of his blood.
Texter has monitored Owen and basically made sure he stayed in good heart health since before he was born, to make sure he remained a good candidate for each successive surgery. More than that, she simply has been there to give emotional support for Owen's family. "When this kind of thing goes down, no one could be ready for this," Don Mottie says. "Dr. Texter was someone to lean on. The whole group of people at Children's was really good-the nurses, the people who work at the front desk, the social workers, the security guards. But she is the one we called in the middle of the night, and she showed us that there was actually something we could do about what was happening."
Texter even brought her own family-her husband, Chad, and her three children, Sam, Jack and Ali-to Owen's fifth birthday party.
"I will always do things I feel will help me make a better connection with the families," Texter says. "I feel like my own experience as a mother helps in my profession. I may not have had their exact experiences as a mom, but I've had the same common worries and fears, and that helps me be a better counselor, a better advocate and a better caregiver for them."
As the technology stands today, Texter-still not sugarcoating anything-says Owen is likely to need a heart transplant somewhere down the road as the strain of double duty on his remaining pump gets to be too much. But at the same time, when there's hope, she's there with that as well. "With Owen, especially since he has done so, so well through all of his surgeries and all his milestones, there's always going to be hope," she says. "Right now, in 2016, there are just no alternatives out there for that systemic pump. But I have seen a lot of technological advances just in my time as a physician, and I think there is always hope that the right advance might come along yet. If it comes, I will be right there to tell him, because one of the best things about this profession comes from the unfortunate fact that this is necessarily a lifelong relationship. He will need care for the rest of his life, and I plan to be right there."