So when we found out that we were pregnant and expecting we were absolutely excited. And then when we found out we were expecting twins, we were over the moon! We thought, what could be more perfect than adding a little boy and a little girl to our family? It was exactly what we could dream of! That was our reality for three months and we were planning and, and then overnight all of a sudden all of that was in jeopardy because I went into labor right in the middle of the pregnancy and it was too early. It was 20 weeks along and two weeks later when we lost our baby girl and thought we would lose our son the same night and didn’t… I don’t think that I will ever be as sad as we were then. It’s just devastating. Our first interaction with Dexter’s parents came before Dexter was even born. We told them that the odds were less than fifty percent that he would probably survive and we asked their permission to to give it a shot. As things started to progress one of the OB’s came in and he looked at how things were going and he said, this is it. We’re gonna do a C-section. We then took him to the NICU and started resuscitation. I was terrified as Dexter was being born because I just, I knew so little about what is possible with a baby who is born at 23 weeks. I didn’t think before I was even in labor that that was a baby that could survive. Being in an NICU is like a rollercoaster ride and Dexter had some ups and downs in his care. And slowly, as he started to get better and better, we started becoming more reassured that it really was going to be okay and at that point one of the doctors said to my husband, you know you’re going to be taking home a normal child from this NICU and it turns out the doctors were right. There are lots of studies that show that babies born at the highest level centers have a much better outcome. So if you’re going to have a premature baby you really want to have a premature baby at a high level center like the University of Iowa. So now we have a fifteen-year-old, a fourteen-year-old, an eleven-year-old, and Dexter’s three and he’s just one of the crowd. He goes to preschool and he’s making friends and talks about what he does at school, he paints paintings and he’s just becoming a fun, vivacious, fiery little three-year-old boy. Seeing Dexter now is, is a highlight of my career actually. We worked so hard. He was one of our first 23 week-ers. He was a baby who things could have gone either way. That’s what happens when you push the envelope. But he ended up doing so well. I saw his mom last year at the March of Dimes and she showed me a picture of him looking like a beautiful happy baby and I said wow, you just made my day and she came back with, well you guys made my life! I thought that was a really, a touching comment for her to make. We’re building a new Children’s Hospital here at the University of Iowa because currently our pediatric services are spread out over a three or four block area. We will be able to bring all our services, all our diagnostic areas, our clinical areas, our outpatient clinic, all within one building. And within that one building we’ll be able to develop a very child-friendly, very family-friendly environment. So I view the new hospital that we’re building as absolutely critical to the future of the Children’s Hospital and pediatric health care in the state of Iowa. We have a phenomenal group of healthcare providers here at the Children’s Hospital. What we don’t have is a state-of-the-art building. The whole goal, again, is to try to provide as family-friendly an environment and as child-friendly an environment as possible so that both the kids and the families heal while the kids are here. We live in Jefferson, Iowa. It’s a small town on Highway 30 between Carroll and Boone. Small community, close-knit community, great place to raise kids. We are a pretty close family. We spend a great deal of time together doing things. We first noticed Reid was having some issues. You know, I don’t know that we really realized that we had a major problem. Well, Reid has had enlarged calves since he was little, walks up on his toes. We took him to a podiatrist, you know they tried some things, stretching and some strengthening, and that really never took. A couple weeks into physical therapy, the physical therapist knew there was something else going on and told us that when we went back to the podiatrist that we would really like to see a neurologist. And we got there and he immediately came back and said he suspected that Reid had muscular dystrophy and at that time, you know, he had a couple doctors to try to get us into and he was really hoping to get us into the University of Iowa Hospitals and Dr. Matthews. Dr. Matthews again, I think, I believe she did some tests, tested his strength, that kind of thing. She told us what, what she thought it was. So we went through the list of possible causes of weakness and started doing the diagnostic testing and came to a diagnosis of Becker muscular dystrophy. Well originally once his diagnosis was made, as a parent you want to do something to help. His diagnosis was one that there was nothing we could do as parents to help. We couldn’t make him better. So dealing with muscular dystrophy has a lot of ups and downs. We come to a diagnosis and usually that’s a very difficult time for families and then there’s a long time when things kind of plateau, when we don’t see a lot of physical changes. About the time of adolescence, though, children are often losing the ability to walk or to run and keep up with their peers. Reid is a great kid. He has the same ambitions that most kids his age have and spends a lot of time at school so some of our time is spent talking about what things are going on at school and, and what things might be challenging and how can we overcome some of those challenges. You know, when you have a relationship built up with someone or a group, you walk in, they not only know who you are and what’s going on with you, but they talk to you like you’re part of the family. They ask him how school’s going, what’s going on in his life. Being part of an academic center, our families have access to research opportunities that they wouldn’t get elsewhere and we’re watching for each one of our patients for opportunities that they can participate in and we’re often a very much a part of the clinical trials and research that, that advances their patient care, as well as the understanding of the disease that might lead to future treatments. I think everybody in the field is very hopeful that we will be able to offer young men with this group of disorders more specific treatment then we are able to offer now. So that’s my hope for Reid. I hope that we’re able to progress to a point where, you know his muscle degradation continues to diminish, and that his life will be extended, that he can make a positive imprint in the world in the future. You know, it’s not how long you live, it’s what you do while you’re living, and the legacy that you leave. So I want him to be happy and proud doing something he loves and we’re encouraging him to, to get there. The new Children’s Hospital is really founded on the premise that we’re providing a system of care for the kids of Iowa and what this means is that we’re not just building a building to take care of kids. We’re really building a system throughout the state that will allow us to optimize care not only here but in the community where the families live and provides us an opportunity to interact with the local pediatricians and the other healthcare providers so that we can provide some assistance and some educational opportunities to provide better understanding of what some of our sub specialty services are. We’re viewing this hospital as, yes it’s going to be the Children’s Hospital of the University of Iowa, but really it’s the Children’s Hospital of the state of Iowa. We view it as a community asset. It will be in many ways the hub that will help us deliver care across the entire state. Our daughter Blair was born and she was 9 pounds two ounces, healthy baby and about 15 months she started having urinary tract infections. So I just decided after our son had such good experiences at the University of Iowa Children’s Hospital that we were going to go to ER and hook up with a pediatric urologist and get some answers that we needed. So the Kuehl family, they had a lot of questions and certainly were very concerned about, about the care of their daughter as well as her persistent infections that she had. So we discussed all the treatment options, but in my mind, given all the problems that she had, I thought that surgery was the best thing for her. And Blair will underwent a four hour surgery. We got out of the hospital and she had a few other issues and I emailed Dr. Storm. A couple hours later that day I had gotten a message from him, and he was actually in Honduras on a mission trip but still had checked his work email and had sent me a message and said, this is what you need to do. Call my office, we’ll go through this whole process. I was able to, you know, you can let them know that these were things that happen routinely after the type of surgery that, that Blair had had and be able to offer some suggestions on how to help Blair recover a little bit easier. That was just awesome. I think the whole process with Dr. Storm and talking to him and having him sit down and go through all of our options, call me even before he met us. So Blair’s continuing care with us at the University of Iowa Hospital. Essentially I saw her a couple weeks ago, she’s doing super. She’s off of all of her medicines now and hopefully she’ll continue to do well and not have any more infections. The reason why we decided to just go ahead to the University of Iowa Children’s Hospital with our daughter is because we’ve had such good experiences with our son and his special needs at the University and there’s just this team of people that come in and just serve you and your child’s special needs. And we have a strong collaboration with other pediatric sub-specialties, such as a pediatric gastroenterology, pediatric nephrology, pediatric surgery. It is hard to watch your kid go through surgery
and just the fact that there’s that comforting environment of people who care and work with your child and work with you. It just takes a lot of stress off of families. And I know that as a parent you have a busy life. You balance not only your work life, but you balance the needs of your spouse, you balance the needs of your kids and all-in-all sometimes you can’t even squeeze it into a 24-hour day. You know, you want the attention of the physician right on you and your child and if it’s a five-minute visit or if it’s an hour and five minute visit, that attention has to be based on the needs of the parents and also based on the needs of the child. For them to leave my office with a smile on their face or for me to go in and for them to tell me that they’re doing better or for the parent to be able to tell me that they’re doing better, I think that’s the best part about my job. One of our very important goals is teaching. We teach medical students, we teach nursing students, we teach physician assistant students, we teach nurse practitioners, we teach all different levels of individuals here at the University of Iowa Children’s Hospital, and so teaching has been incorporated into the design of the new building. We have a great opportunity here to provide a world-class education in a world-class facility for the physicians and caregivers of tomorrow. So the faculty and academic medical center are going to be at the cutting edge of the latest therapies for whatever the illnesses that your child’s being treated for. You get additional level of thought because these trainees are in the room and outside of the room, talking with the faculty, thinking about about your child, that you’re not going to get without that educational component. Being a single parent to two little boys is quite interesting and busy. My son’s name is Xavier and he is almost three years old. Liam is Xavier’s older brother. He is a lot of help with Xavier. He likes to try to hold his hand when he’s going places and guide him if he has trouble seeing. So my son Xavier he, when he was a baby I noticed that he would constantly try to pull blankets up over his eyes and shy away from the sun, but also want to stare straight at the sun at the same time depending upon its angle. I decided to take him to the opthamologist to see if he could get his eyes looked at and he was diagnosed with a congenital nystagmus, which is just, you know, a shaking of the eye that happens, you know, when you’re a child and usually will go away by the time you’re 5, maybe even before then. But instead of anything ever getting better I just noticed that his eyes just kept on shaking and almost getting worse in certain circumstances, such as when we would go outside or if I would take him into a brightly lit room. So I decided to contact Iowa City and come and see if I could kind of delve more into the depths of what was really going on here. And so when a child comes in we do a battery of tests in the clinic and to the child it just seems like we’re playing. We have a lot of things that look like toys and games but we’re watching their eyes and watching the responses. So in Xavier’s case we had enough signs that were typical for achromatopsia that I thought we should first start with genetic testing and very quickly we found that he has a mutation in the most common gene causing achromatopsia. When I first met Dr. Drack she was fantastic, you know, she was, you know, determined you know to find out what in the world was going on with Xavier. Xavier has a need for glasses but the special thing about his glasses are the tint in his glasses so we have filters that we can try with the child looking at different targets like toys and things that they’re interested in and we can really tell which wavelengths of light are best for them. There is the ability to, for some achromats, or people with achromatopsia to, you know, have some color vision but it’s very doubtful in his case and it also depends upon which gene is, is affected. And the exciting thing for achromatopsia is that we think that we see an improvement with gene therapy or gene replacement therapy and right now we have a human clinical trial for another type of pediatric genetic eye disorder, Leber’s congenital amaurosis, where we can replace the gene in a clinical trial and hopefully improve kids’ vision. So that’s going on now at the University of Iowa. So we’re hopeful that in the future achromatopsia and others of these genetic pediatric retinal disorders will be treatable by gene therapy or by other means. If we actually try to do the gene therapy before he’s nine, we can actually save his color vision. We don’t know if it would be a hundred percent but, you know, he would actually gain color vision and now he could be one of the first to do the gene therapy replacement and see color again and see as we do, enjoy the world that we see. For me, being an opthamologist is, is a really rewarding thing to do every day. But the most important part of it here at the University of Iowa is that we have clinician scientists, including myself, who can see patients on some days of the week and go to the lab and work on those same disorders the other days of the week. And I really think we’re seeing such great strides recently in these genetic eye diseases that we’re giving hope to a lot of people. We’re going to see treatments and cures for a lot of these disorders in the near future. To work with the University of Iowa Children’s Hospital and understand, you know, the genetics behind his condition and see cures coming forth, because this is the time that everything is happening. It’s the brink of a revolution, if you will, when it comes to the genetics fields. I feel like Xavier’s future is going to be really bright. We are the only academic pediatric program in the state that is doing cutting-edge research to try to find new cures and new therapies for children with illnesses. If we don’t do that then we’re not advancing the care of children into the future. The University of Iowa and Carver College of Medicine has really been dedicated to taking our basic research findings that occur at the bench, the very basic understanding of disease processes, and translating that to bedside care and families and kids. The new University of Iowa Children’s Hospital is going to be a wonderful environment in which to do that. It’s going to be an environment where we can continue to attract some of the country’s and some of the world’s greatest researchers and where we can provide some of the benefits of that understanding of the latest technology and the latest medical breakthroughs to the kids and families of Iowa. Bailey and I start from Mason City where we live and it’s about a two and half hour drive to the hospital and then she’s hooked up for three hours to the dialysis machine, so we travel approximately about five hours at each trip, three days a week. So it’s about a 10 hour day from start to finish. My due date was September 17 of ’03 and first ultrasound looked great, all my doctor visits went great. We went to Minneapolis, which is a couple hours away from where we live and I woke up at five o’clock that morning and woke my husband up and said, I think I’m in labor and we found out then when I got to the hospital that she was, she had turned, so she was born breech, came out folded in half. They took her and I knew right away that something was wrong because they didn’t bring her right back and then they gave us the option if we wanted to go to Iowa City or Des Moines and I said I just want to go where she’ll get the best care and then they came back in and said she was gonna be going to Iowa City by helicopter. So I want to kind of put this in a frame of reference. Here’s a little girl who was born with a genetic disease that many kids don’t survive. It’s called autosomal recessive polycystic kidney disease. Many kids that are born with it in the NICU pass away before they get to ever have a chance to thrive or live. And Bailey needed dialysis early on and she needed a transplant. My mom just stepped right up and said I’ll give her mine. That, the day that she gave Bailey the kidneys, it’s another birthday in our family. Kidney transplants are wonderful. They’re a gift of life, but you know they do wear out over time, and you know Bailey’s had a pretty good long run with her kidney. But a few years ago we started to notice that her kidney function started to get a little bit worse and eventually got to the point where she was starting to get kinda tired. But I can remember after the first couple of episodes where we started to do dialysis on her again how her energy level shot up. Her mom sent me a video and said I want to show you what you guys have done. We asked her, she’s nine, and we said Bailey, do you feel different now after dialysis than you did before? And she said yes, I feel much better. You know what is the old adage they say, don’t worry about people watching you, just dance like you would if nobody was watching you, that’s her. And I can’t say enough about the physicians here. I could go on and on. They’re just amazing and the nurses, they’re now Bailey’s friends. They’re our friends. I have a committed group of, of professionals who go well above and beyond what they need to do. And they do it because it’s the right thing to do. Bailey, when she does get done with her dialysis, it’s a very happy, free moment for her. But she does love to dance around and she has to give everybody a hug goodbye before we go on our journey back to home. It’s, it’s a testament to kind of the nurses they are there and how they take care of their patients. You know when you walk into a dialysis unit and you see you know, a little girl like Bailey dancing, that’s pretty amazing. And to me you don’t really have to do much else to say we’re doing something okay. My dreams, I have both short-term and long-term dreams for Bailey, but those dreams wouldn’t have been possible without the Children’s Hospital here in Iowa City. They’re just simple dreams, just for her to be successful and happy and like she is now. Just to grow into a beautiful young woman and be happy. That’s it. We have a secret in Iowa and we haven’t talked about it very much. We have a fantastic Children’s Hospital. We really do. You know, I see my kids dance. What more could you ask for? The new Children’s Hospital is going to be a fabulous facility, but we’re already providing world-class care. The University of Iowa Children’s Hospital is nationally ranked and we’re going to continue to provide world-class care until we’re in our new facility. Once we have our new facility we’ll be even better. I was surprised when I got here about how many unbelievably fabulous programs are here that I wasn’t aware of. And I think the reason I wasn’t aware of them is because Iowans are, are modest people. They don’t go around bragging about what they do. It’s a secret in the middle of the heartland. We have all the specialties that are here to take care of any kids’ needs. If you’re in another center they’re going to be talking about how good you are all the time. We just smile and kind of carry on because we’re from Iowa and that’s what you do. The obstetricians, the nurses, the respiratory therapist, the lab technicians, everyone does this super job with these little kids. Hundreds of people have to make thousands of really good decisions and I get to work with a group of people who can do that every day. So we have all these partnerships that we come together and oftentimes we’ll discuss the care and treatment plan of an individual patient. It’s unique and in the things that we can offer that I feel are not available in the entire state of Iowa. The expertise isn’t restricted to the physicians but we have expertise at every level. It’s a magnet hospital. We have wonderful pediatric nurses, everybody who interacts with the children loves what they do and cares about children. I think the best part of my job is the families. There are amazing and resilient people and I get an opportunity to help them through a journey that they didn’t plan on. And sometimes that’s really a challenge for the families but it’s rewarding to know that I can be part of their life in a very helpful and meaningful way. I think the thing that makes the University of Iowa Children’s Hospital special to me is the goal that it has of being the top Children’s Hospital in the country. I think if you work toward that everyday, if you have a critical mass of people who don’t just want to come in and just put in a nine-to-five shift, they want to come in and make this place the best in the country. These practitioners, these subspecialists, whether they be in neurosurgery, or orthopedics or pediatric nephrology, the kidney doctors, they’re known throughout the country and throughout the world and I think that the new University of Iowa Children’s Hospital will punctuate that world-class care that we’re able to provide right here in Iowa. This children’s hospital will be will be the nidus to deliver care across the entire state that will be in every way state-of-the-art, cutting-edge. We want to be at the forefront of delivery of pediatric care for the entire nation and this children’s hospital is going to allow us to achieve that goal. And you know at the end of the day, even when we walk into hospitals as adults it’s pretty hard not to smile when you see a playground and you understand, that’s for the kids and if they’re out on that playground, even thought they might have some medical issues, they’re doing okay. So I think that’s what, what it means. It’s about dancing, right?