5:30 a.m. – Annie wakes up, the earliest of everyone in the house. She starts chatting, singing and reading books in her “big girl bed” – a tent that goes around the mattress with special lights. “She wakes up like she’s already had two cups of coffee,” Courtney says.

6 a.m. – Annie goes to the potty. She has been potty trained for more than a year. Then she heads to the kitchen for a gluten-free and dairy-free breakfast. Annie eats very healthy food. The more consistent and predictable her day is, the happier she is.

6:30 a.m. – It is time for Annie to get dressed. She doesn’t like having her hair brushed, but she loves brushing her teeth. She compliments herself on how good her outfit looks. Her “shoe house” is what she calls the shoes by the back door, and she picks out a pair before getting her backpack.

7:30 a.m. – Courtney takes Annie to the cardiologist – the longest appointment. Annie gets very upset about anything medical-related, so Courtney and Spencer, Annie’s father, let her know the day before appointments. Courtney also takes Averie, a TCU premed student, to appointments. She serves as their personal child life specialist; while Courtney fills out paperwork and has serious conversations with the doctor, Averie helps Annie.

7:50 a.m. – As Courtney pulls into the parking garage, Annie starts getting fussy and anxious. “Copy mama,” Courtney says. “I am brave. I am safe. I will be with my mama. I will be with Miss Averie. My doctor is my helper.” Annie repeats everything Courtney says, and it calms her down.

7:55 a.m. – Courtney, Averie and Annie walk into the doctor's office. Courtney brings a medical calming kit she created – a special bag filled with music, books, pictures and interactive educational toys. Annie is now able to participate in the appointment and feels empowered.  

8 a.m. – Annie’s name is called, and a tech walks them to a room to check her vitals. “With kids, it is important to gain trust and rapport with the tech, especially for Annie since she has a lot of medical anxiety, and we have worked hard to get through it,” Courtney says. Courtney asks Annie to say her name to the tech, then Courtney spells the tech’s name for Annie. They play a game with weight and height checks as Courtney asks, “How big and tall do you think mommy is?” Annie does great and they celebrate with her.

8:15 a.m. – Back in the room, Annie gets upset again, and Averie pulls out the calming kit so Courtney can go to the restroom. The nurse enters and introduces herself to Annie before prepping her for an EKG, which she had not had in a year. Knowing the number of leads and wires can be a problem, Courtney places a sticker on herself and says, “See? Easy peasy!” It is a struggle, but Annie gets through the procedure as she counts the stickers in French. They celebrate again after the EKG.

9 a.m. – Now it’s time for the echocardiogram – the hardest part because it is in another room. This is an important test to see Annie’s heart at baseline and to check for pulmonary hypertension. With an echocardiogram, the patient must remain still and calm so the technician can capture all the angles and ensure the heart rate and blood pressure don’t’ affect the results. 

Annie sees the table with paper on it and thinks it means she is getting a blood draw. “Up to this point, she hasn’t had any screen time,” Courtney says. “We save it for this moment – like the Hail Mary.” Courtney lies on her back next to Annie, and they snuggle. They sing songs from “Frozen” together, and the nurse laughs as Annie quotes the entire movie. “It’s so fun to watch Annie break people’s expectations of her,” Courtney says.

9:30 a.m. – Robert Loar, M.D., Annie’s cardiologist, enters the room. Annie was one of Dr. Loar’s first patients; Courtney began seeing him while she was pregnant. Dr. Loar is a TCU horned frog, too, and they discuss life before diving into medical updates. “He genuinely cares for Annie,” Courtney says.

Dr. Loar says Annie’s pacemaker has eight years of battery life left. He and Courtney then discuss heart pressures and anatomy; he says her repair is holding up beautifully and is exactly what he wants to see. 

“Annie’s story is so extreme and miraculous,” Courtney says. “Annie’s journey is still being used for good to help treat other children and give parents hope.”
Annie says, “Dr. Loar, I love you,” and he responds, “Annie, I love you too.”

Courtney packs the toys and celebrates with Annie again. Annie says, “We did it. I was brave. I was safe and we saw the doctor.” This is a big moment for Courtney, who has been helping Annie process emotions as a successful coping skill.

10 a.m. – Courtney takes Annie to KinderFrogs, a school program designed to prepare children with Down syndrome for kindergarten. Annie walks herself into the classroom, hangs up her backpack and sits in her chair. “Annie loves everything about school so much and has never missed a day – just leaves for doctor’s appointments here and there,” Courtney says.

2:45 p.m. – Courtney and Russ, Annie’s baby brother, pick up Annie from school.

3:15 p.m. – Courtney, Russ and Annie pick up Wells, Annie’s older brother, from school.

3:30 p.m. – Annie plays at home. Courtney is intentional with screen time, so they try to avoid TV and use it only as a last resort. They play outside, in the playroom or in their bedroom. Annie does a great job playing by herself or with her brothers as she becomes more independent.

6 p.m. – Dinnertime! Annie’s diet is clean and nutritious, which Courtney says provides tremendous health benefits.

7 p.m. – It’s Friday night, which means games with the family. They have found games Annie enjoys playing with them. “It is so fun to push her to do more, include her and see what she can do,” Courtney says.

7:45 p.m. – Annie chooses her pajamas. “No mommy I do it,” she says.

8 p.m. – Spencer lies with Annie until she falls asleep.

“There is no doubt the 3D print of Ivy’s heart that surgeons used to plan and prepare for her procedure contributed to the positive outcome and long-term success of the surgical repair,” said Steve Muyskens, M.D., cardiologist and medical director of cardiac MRI and the 3D Lab at Cook Children’s Medical Center–Fort Worth. “Three-dimensional printing takes away the guesswork for physicians, allowing them to completely visualize a patient’s anatomy and unique anomalies and map their intervention before they get to the operating room.”

Ivy, now 10, was born with congenitally corrected transposition of the great arteries (ccTGA) in which the two lower pumping chambers, or ventricles, of her heart are reversed. In a normal heart, the right atrium sends unoxygenated blood through the right ventricle, which pumps it through the pulmonary artery into the lungs. The blood is then oxygenated and flows back into the left atrium. From there, the left ventricle pumps the blood into the aorta where it is carried throughout the body.

In Ivy’s heart, however, the ventricles were switched. This meant the normally weaker and thinner-walled right ventricle was doing the high-pressure job of pumping blood throughout the body via the aorta—a function best suited for the thicker, stronger left ventricle. This inefficient pumping function put her at high risk for heart failure, irregular heart rhythms and sudden cardiac death. Ivy’s heart was further complicated by having a hole in the bottom chamber and a very small pulmonary valve, causing limited blood flow to her lungs. Ivy’s heart defects were unable to be repaired in infancy, so she had a palliative procedure at 2 weeks old to stabilize her condition while she grew.

Then, at 19 months old, Ivy became a candidate for the Nikaidoh procedure, also known as an aortic translocation. The procedure is named after Hisashi Nikaidoh, M.D., a retired Cook Children’s cardiovascular surgeon and innovator. Dr. Nikaidoh developed the complex open-heart surgery that reverses the translocation and reconstructs a more normal ventricular and arterial layout. He assisted Vincent Tam, M.D., during the surgery. Dr. Tam is a pediatric cardiothoracic surgeon and Cook Children’s medical director of Cardiothoracic Surgery.

To prepare for the procedure and to explain the complex surgery to Ivy’s family, Dr. Tam used a 3D printing of Ivy’s heart that was created in Cook Children’s 3D Lab. The printed heart allowed Dr. Tam to visualize Ivy’s exact anatomy so that he knew what to expect going into surgery.

It also helped Ivy’s family understand her complicated diagnosis and Dr. Tam’s plan to save her life.

“I've noticed over time that having these 3D models helps parents and other care providers, like nurses, better connect with the plan of care,” Dr. Muyskens said. “If you think about it from a parent standpoint, you're trusting this person, a surgeon or even just a cardiologist like myself, to take your child on a journey that's going to make them as happy and healthy as possible, oftentimes with no understanding of this very complex issue. So if you're able to then bridge that gap and have the surgeon show a parent an actual 3D model they can hold in their hands and say, ‘Here's your child's heart. This is why it's so complex. This is why it's different. There’s not a template for this, but this is what we think we can do. Let's walk through this together and figure out how we want to care for your child as a medical team and a family.’ I think that really helps connect those two pieces when you have a really unusual case.”

It certainly did for Ivy’s mom, Elizabeth. She says the physical model of Ivy’s heart helped her understand her baby’s complicated condition and Dr. Tam’s surgical plan. Having that knowledge was empowering and compelled her to hold on to hope during her daughter’s day-long surgery.

Surgical Solutions

In addition to his work in the 3D Lab, Dr. Muyskens is a cardiologist with a full patient load. He often partners with cardiothoracic surgeons to repair congenital heart defects and cardiovascular anomalies in his patients. When 2D imaging was the only resource for visualizing and understanding a patient’s anatomy, it wasn’t uncommon for Dr. Muyskens to hear surgeons say, “We’ll have to see for sure when we get in there,” when discussing a surgical intervention. This element of the unknown sparked a vision to create the 3D Lab to give physicians a deeper, more detailed look into the problems they were working to solve.

“I always felt like we need to be doing more and wondered how I can further the offering we have to help surgeons prepare for complex surgeries,” he said. “Your heart is about the size of your fist. So if you think about the size of a baby’s heart, and then trying to do open-heart surgery and move coronaries and great vessels and create new pathways for blood flow, it's a very complex surgery. By 3D printing the heart, we can have a much better understanding of those relationships prior to surgery. That's how we got started. Now we have three printers, surface scanners and virtual and augmented reality options. We've expanded in a lot of ways.’

While the 3D Lab originated with cardiology, its tools and resources are now available to multiple specialties. In the 10 years since the Lab’s debut with Ivy’s surgery, specialties such as plastic surgery, craniofacial surgery and orthopedics now utilize its capabilities to create precise, unique copies of spines, facial features, bone structures and more. These models can be printed in multiple colors and materials that are engineered to be more tissue-like, whether that’s bone or soft tissues. This creates a more realistic feel for a surgeon who wants to practice drilling into bone or cutting into tissue prior to a surgery. 

Practice Makes Perfect

The 3D Lab has expanded its pre-operative practice options, too.

“We're still doing the printing that we have done, but we've also moved a lot more into virtual surgical and interventional planning,” Dr. Muyskens said. “For complicated cases, we want to have a pre-operative or interventional plan in place so we know, for example in the catheterization lab, the exact camera angles we need and what size stents we should use. Now we can virtually place stents during simulation and review our work. Sometimes we go down the pathway virtually and we realize that it's probably not a great case for the cath lab because it’s actually much trickier than the images would've suggested. So we will then send those patients to surgery. That's kind of been our current frontier.”

Much like a pilot in a flight simulator, virtual reality allows surgeons to see internal structures, plan their approach and practice their cuts in the Lab rather than saving these critical and time-consuming decisions for the OR when the patient is under anesthesia and the surgical site is open. This tangible experience outside of the OR builds valuable knowledge and spatial awareness of a patient’s unique anatomy, increases surgical accuracy, removes the element of surprise and decreases time under anesthesia—all precursors to improved outcomes for patients. 

Mirror Image Models

The addition of a 4B printer allows the Lab to produce biocompatible materials that can be used temporarily in the sterile surgical field, like custom cutting guides or molds used to repair facial fractures.

Take a cheekbone fracture, for example. Classically, a surgeon would shape a piece of mesh to look similar to the other side, place the mesh inside the cheek area and attach the broken bones to the mesh so that they heal in approximately the same shape as the other side. 

“Now we can take scans of the healthy side, mirror the image and print a 3D model,” Dr. Muyskens said. “Surgeons can then take that into the OR and prebend plates and mesh around the printed model to create the ideal version of the fractured side. Not only does it save time, but it allows the surgeon to create a repair that looks exactly like the healthy side.”

The 3D Lab’s use of surface scanners also contributes to improved aesthetic outcomes. By scanning an already 3D object, like an ear, the Lab can produce exact replicas that a surgeon can use to repair malformations.

Leveraging these tools to plan ahead and remove as much of the guesswork as possible leads to fewer complications and improved outcomes. It also translates to lower health care costs for patients and the health care system as a whole, according to Dr. Muyskens.

“We were pretty early adapters of this technology,” Dr. Muyskens said. “So I think it says a lot about Cook Children’s and our desire to provide innovative care and solve complex problems using state-of-the-art methods.”

10 Years and Counting

Today, Ivy is full of life. Thanks to good surgical planning made possible with the 3D Lab, expert execution by Dr. Tam and Dr. Nikaidoh, and ongoing care from Cook Children’s cardiologist Lisa Roten, M.D., Ivy’s heart is still going strong. She loves to skate, play with her dog and have fun.

“Her personality is so big,” Elizabeth said. “She acts like nothing happened to her. She acts like she's not even sick, and like she doesn't have a pacemaker. She does what she wants to do. She's like a little energizer bunny. Nonstop. She just keeps going.”

She and her husband, Zach Beavers, spoke with numerous hospitals, but none would take them. Most places were either not willing or not equipped to handle the heart defect that had been detected in their unborn daughter.

While still in the womb, Anna Claire was diagnosed with a rare heart condition in which the left side of the heart is too small to pump blood. To make things more complicated, she also had a genetic condition that stilted her growth. Two months before Anna Claire’s due date in April, the Beavers’ found out their home hospital in Georgia was not willing to operate on her due to the high risks.

With less than a month to go, the Beavers found a ray of hope when their doctor heard about a hospital in Texas that had unusually positive results treating Anna Claire’s condition. There seemed to be one place that would help them: Cook Children’s Medical Center – Fort Worth. 

One of the first things Cardiologist Kevin Wilkes, M.D. learned about Cook Children’s was that the hospital doesn’t shy away from taking care of the most medically complex children. As a pediatric and fetal cardiologist, Wilkes also quickly learned—and is part of the reason—that Cook Children’s excels at treating those children.

In 2024, Dr. Wilkes noticed one area in particular where Cook Children’s seemed to achieve better patient outcomes than other hospitals: a rare but life-threatening combination of Hypoplastic Left Heart Syndrome (HLHS) and Turner Syndrome. In HLHS, the left side of the heart does not develop properly and cannot pump blood to the body. In Turner Syndrome, the X chromosome is missing or partially missing. In very rare cases, babies -- like Anna Claire -- can have both.

Through the Pediatric Research Program, a partnership between UNT Health Fort Worth and Cook Children’s, third-year medical student Anisha Saripalli started to look into the numbers. Over the summer of 2024, she, along with Research Scientists Chris Tsao and Fadeke Ogunyankin, dug through electronic case records in Cook Children’s basement. The results were compelling.

Compared to other hospitals, Cook Children’s outcomes for babies with Turner Syndrome and HLHS are some of the best in the nation, far exceeding the mortality rate of other centers. On average, between 80 and 90% of babies with both conditions die across the country after their first surgery. In fact, the prognosis at many hospitals is so poor for those patients that many places won’t even attempt to perform surgery on a baby with both conditions. However, at Cook Children’s, 100% of babies survived their first surgery.

“That's pretty solid to recommend that these patients go through the surgery, because we're increasing their chance of having a good life. And we're not just saying, ‘oh, well, you're incurable, untreatable,’” Saripalli said.

In short, Cook Children’s gives these babies a chance.

And hundreds of miles away, one family was asking for just that.

In February 2025, the same month that Saripalli’s research was presented at a cardiology conference, the Beavers found out that Anna Claire had both HLHS and Turner Syndrome.

Their birth plans suddenly vanished; the Atlanta hospital where Sarah Ellen planned to deliver said it did not have the ability to treat Anna Claire’s condition.

Because the left side of Anna Claire’s heart could not pump blood, the right side of her heart would need to become the pumping chamber for the rest of the body. But few hospitals are able or willing to perform the surgery on babies with Turner Syndrome due to the added complications.

Anna Claire would need three heart surgeries, the first of which -- called the Norwood surgery – would have to be done within three days of her birth. The Beavers contacted several major heart centers, but they all said they could not take Anna Claire.

“We were just hoping someone would say yes. Because statistics really were not super favorable, and so we were really prepared for the worst,” Sarah Ellen said. “But we were just hoping for a chance.”

At the end of February, Dr. Wilkes presented Saripalli’s research at a Cardiology Conference in Florida. She and the research team found that between 2013 and 2024, Cook Children’s saw six babies with HLHS and Turner Syndrome. In contrast to the high mortality at other hospitals, at Cook Children’s, five of the babies (83%) are alive. 

Coincidentally, the Beavers’ cardiologist happened to attend the presentation. He immediately thought of his patients back in Georgia.

“On Friday afternoon, our home cardiologist called us and was like, ‘hey, there's someone with really good statistics,” Sarah Ellen said. “And that probably got us through the weekend, because we already had gotten two ‘nos’ from hospitals. And we were like, ‘What are we gonna do?’ We don't have time.”

That Monday, the Beavers scheduled a phone call with Dr. Wilkes and Vincent Tam, M.D., the Medical Director of Cook Children's Cardiothoracic Surgery. Dr. Tam walked them through the procedures he would perform on Anna Claire. While other hospitals would not consider taking on Anna Claire’s condition, Dr. Tam seemed undaunted.

“(Tam) never balked at any of it,” Zach said. “He never thought that it was a challenge or any concern, and just made it seem like he's just gonna do the same thing that he always does, and it was gonna be great.”

The Beavers packed the biggest suitcases they had and, leaving behind their home hospital and friends and family, headed to Texas.

On March 25, the Beavers stepped into Cook Children’s for the first time.

“We walked the halls receiving a quick tour and then we had the opportunity to meet with Dr. Tam, Anna Claire’s surgeon,” Sarah Ellen wrote that day on the family’s CaringBridge blog, which provided updates on Anna Claire. “After over an hour with him, we were more at peace believing that the Lord intended for us to be here all along.”

Leading up to Anna Claire’s birth -- and her open-heart surgery – Dr. Tam, Dr. Wilkes and other Cook Children’s staff did everything they could to make the Beavers comfortable and confident. Dr. Tam explained the surgery to them again and it was clear to the Beavers that he had studied and perfected the procedure.

But there was still a risk. Saripalli said there is not much research on babies with both HLHS and Turner Syndrome because the condition is so rare.

But Dr. Tam and Dr. Wilkes were confident. Cook Children’s has such good outcomes, they said, because of the infrastructure and support built into every layer of the medical center.

“I've been here at Cook Children’s for more than 20 years, and we have gradually built a team to the point where we really have excellent people working in all of the teams involved,” Dr. Tam said. “Including nursing staff, respiratory therapy, the technicians that do the ultrasound for the Echo, all of our cardiologists, the ICU doctors, the anesthesiologist doctors, the nurses that help with anesthesia. And my whole operating room team. I mean it's a huge team effort.”

On April 3, that medical team assembled to welcome Anna Claire to the world.

Anna Claire was born right on time, at 4:56 a.m. on her due date at a nearby hospital before being transferred to Cook Children’s and Dr. Tam knew he had to move quickly so that the right side of her heart didn’t overwork itself. The next day, Anna Claire had her first open-heart surgery.

The group effort paid off; Anna Claire’s first surgery was a success. The team successfully began the process of reworking the right ventricle to support the rest of her circulation.

The following week brought another scary moment when blood and fluid started to build up around Anna Claire’s tiny heart and the medical team determined they needed to open her back up. Fortunately, Dr. Tam and the team found the source of the bleeding and stopped it immediately.

The next weeks brought other challenges and still more members onto Anna Claire’s medical team. Her feeding, oxygen levels, sleep patterns and every internal system were constantly monitored. The next five weeks, Zach said, felt like months.

“Yeah, there were days it was just… you kind of went to bed like, ‘man, this was a lot,’ and you woke up knowing ‘we're doing it again today,’” Sarah Ellen said.

But they also found support at Cook Children’s.

“In these days, this place has held us,” Sarah Ellen wrote at the time on her blog. “Strangers have become best friends and family. Nurses and doctors have become dear friends. Staff members have learned our family’s story. The doors we walked in on March 25 have become a place we will forever call home.”

Anna Claire was able to temporarily leave the hospital on May 30 and stay at the Beavers’ temporary home that a local DFW family offered them. On July 24, she had her second open- heart surgery. While anxiety-inducing for the Beavers, the surgery went well, and Anna Claire made the monumental milestone of moving from the ICU to the less intensive Cardiac Step Down Unit.

Exactly five months after the Beavers arrived -- unsure of how long they would be away from home and uncertain about their daughter’s future -- the family of three left Fort Worth to head back home to Georgia.

Leaving was emotional for many reasons. They were excited to return to their home, family and, most importantly, their Georgia Bulldogs (Anna Claire had a jersey waiting for her at home). But they had to say goodbye to the dozens of people at Cook Children’s who made one of the most challenging times of their lives into something bearable. On Aug. 8, they visited the Cardiology Unit with Anna Claire, who wore a jumper adorned with blue flowers and a white bow. The staff excitedly gathered around her, commenting on how strong she looked and how well she drank from her bottle.

Two of Anna Claire’s nurses with the Home Monitoring Unit, Emma Hughes and Mariah Trammel, marveled at how she had exceeded everyone’s expectations.

“Just in general, having her heart diagnosis is really challenging and she has a genetic component on top of that, which adds to the complexity,” Mariah Trammel, Heart Center Discharge Coordinator, Cardiology-Administration, said. “So we were one of the only institutions that were willing to take her on and do her surgery. And she has done incredibly well.”

Before leaving Fort Worth, they also met Saripalli for the first time. For Saripalli, meeting the family brought home the fact that her research, and the decades of work it's based on, has real, life-saving implications. Saripalli’s project highlighted how Cook Children’s has created a collaboration between research and clinical medicine that leads to immediate impact. Medical research can take years to trickle down to actual patients. Cook Children’s partnerships with universities like UNT Health Fort Worth means solutions can be rapidly translated to real results.

Saripalli, Dr. Tam and Dr. Wilkes hope the Beavers’ story and Saripalli’s research provide a similar ray of hope for others.

“This research at Cook Children's was a game changer,” Dr. Wilkes said. “And I think you see that in how quickly it affected the family. By getting that information out there nationally at a conference within a week, we were able to change the outcome of a family. I hope in the future we can change the outcome of many more families undergoing this type of heart surgery.”

Anna Claire is now seven months old and continues to thrive in Georgia.

Just a few years earlier, orphan trains rumbled through Texas towns, carrying vulnerable children westward seeking new homes and opportunities. In Fort Worth, amidst the challenges of a growing frontier town, individuals and families opened their hearts and homes to these children. Some specifically chose to take in the sickest among them, the ones with special needs, or those whom others might have overlooked. It was a poignant time in the nation’s history, but that legacy of compassion would soon inspire a new kind of home for vulnerable children—a place devoted to healing and to a Promise to improve the health and well-being of all children in its care and communities.

A lot has changed in a century. Orphan trains are a thing of the past, replaced with child welfare services that aim to keep children safe and families together if possible. Camp Bowie is now a boulevard bridging history and commerce; the Stockyards are an entertainment hotspot showcasing cowboy culture; and Fort Worth’s population is nearing 1 million, making it the 12th largest city in the country.

But one thing remains the same. The spirit of embracing the vulnerable and offering hope to those most in need still runs deep in the heart of this community. Through all of Cowtown’s transformations, Cook Children’s has risen to meet the needs of the moment—expanding its campus, evolving its technological capabilities, and adding services to improve the health and well-being of all children in its care.

Today, Cook Children’s begins a new chapter in its 107-year history of hope and healing by breaking ground on the site that will soon see the rise of a new 760,000-square-foot patient care tower, currently referred to as the West Tower.

“About 59 people move to this area every day,” said Stan Davis, president of Cook Children’s Medical Center – Fort Worth. “To keep pace with this unprecedented growth, we must also expand. This isn't just about getting bigger. It's about ensuring we can continue to be that steadfast home for every child who needs us. It's about equipping our exceptional doctors and nurses with the leading-edge tools they need, providing a comforting space for our tiniest patients, and offering a sanctuary for our sickest children.”

Expanding the Blue Peaks
The addition of the West Tower will enhance Cook Children’s Heart Center, already home to the nation’s top pediatric cardiologists and cardiovascular surgeons. The growth, which includes two new dedicated cardiovascular operating rooms, paves the way for Cook Children’s surgeons to perform life-saving heart transplants.

The West Tower also makes way for the expansion and redesign of Cook Children’s Pediatric Intensive Care Unit (PICU). Designs for the new PICU focus on two key elements for supporting healing and improving the patient and family experience—sunlight and privacy.

Over the past decade, studies have shown that a lack of natural light and loud environment can increase the risk for what doctors call ICU delirium, according to Kyle Brown, M.D., PICU co-medical director. It is a common occurrence in intensive care settings, especially those like Cook Children’s current 20-year-old PICU where there are few private rooms and natural light is hard to find.

“Some kids that come into the ICU after a serious injury are thinking clearly and know 100% where they are and who their family is. Mentally, they are their usual selves,” said Linda Thompson, M.D., co-medical director of Cook Children’s PICU. “Then, with a few days of not sleeping well, with pain medicine on top of that, and being stuck in bed, they can start to get confused. They don’t recognize people as well and they can start to see things that aren’t there. This is considered ICU delirium.”

One Patient’s Experience
For former PICU patient Emerson Bellucci, it only took 24 hours for the delirium to set in.

In 2024, Emerson spent 36 days in Cook Children’s PICU following a rare and life-threatening allergic reaction to the common antibiotic Bactrim. The reaction damaged her lungs so severely she required life-support via extracorporeal membrane oxygenation, or ECMO. It is the most advanced form of life support available. Essentially, an external artificial lung. A pioneer in her own right, Emerson was one of very few patients to remain awake and even walk around while on ECMO. Most are fully sedated during this life-supporting treatment.

In the initial days of Emerson’s PICU stay, she and her family shared space with 42 others healing from severe and traumatic injuries and illnesses. In her case, Emerson was separated from neighboring patients only by a curtain. The sights and sounds of every other patient’s monitors, machines, televisions, and even the cries of an infant patient, often interrupted her sleep and added to her own anxiety about her illness. The lack of natural light caused her to confuse her days and nights.

“There were no windows to notice it was night and we were supposed to be sleeping,” said Ashlee Bellucci, Emerson’s mom. “I think that was the beginning of her delirium that really set her pattern to where she was up a lot at night. As a mom, you’re up with her, too. So it was hard.” 

Despite the best efforts of Cook Children’s PICU staff to institute daytime quiet hours for napping, simulate nighttime hours with low light settings, and minimize disruption while caring for a neighboring patient, the scenario described by Dr. Thompson and experienced by Emerson happens over and over again.

“When we have increased delirium, that increases the length of time that patients spend in the ICU and the length of time that they spend in the hospital,” Dr. Brown said. “It also leads to what we now call post-intensive care syndrome, which is something that both patients and families can experience after they leave the ICU. This includes things like PTSD and anxiety.”

Once Emerson was placed on ECMO, she was moved to a more private, enclosed space in the current PICU. While it had a small window that helped regulate her sleep, it did not have a private bathroom. Emerson’s parents still had to trek to the family waiting area for showers and restroom breaks.

“Having to walk down the halls in my pajamas to the bathroom was very inconvenient,” Ashlee said. “But I think one of the hardest things was shower time. Her dad and I had to plan showers around when doctors would be visiting so that we could be sure one of us was there. I felt like a college kid in a dorm taking all my things, and having to go down and sometimes wait for a shower. Inevitably, you would forget something.”

The design of the new PICU aims to change that.

“Instead of making families feel like they're coming into our place, we need a way to make it feel more like home for them and more like we're actually entering their space,” Dr. Brown said. “That's really what creates a more healing environment for the patient and family,” Dr. Brown said.

Hope Lights the Way
In the redesigned PICU, every patient will have a fully enclosed private room with a window, as well as a private bathroom. A sliding glass door with a curtain for privacy will shield patients from the sights and sounds of their neighbors’ care and machines, while allowing the medical team to keep a close eye on their patients. Quiet sleep will go uninterrupted by the commotion of a middle-of-the-night admission of a new neighboring patient. Parents and young patients can focus on their own healing without the added trauma of witnessing the circumstances of others. When the sun rises, patient rooms will be drenched with natural light, awakening their souls to the hope of a new day.

“I think the first time I noticed the little window it just reminded me of outside and that I won't be stuck here forever,” Emerson said about the more private ICU space she was moved to while on ECMO. “Having a window definitely increased your mood. Having sunlight is just like a happy thing.”

New Frontiers
The West Tower will be a place where Cook Children’s charts new frontiers in medical research, ensuring that every step forward in patient care is informed by the rigorous pursuit of knowledge. While Cook Children’s already has 300 open clinical trials, as well as 500 ongoing studies, the expansion of services like Cardiology and Pediatric Intensive Care opens new doors for even more research that advances medicine and shapes the quality of care.

Take cancer treatment, for example. Over the past 50 years, research-driven protocols have decreased the five-year mortality for Acute Lymphoblastic Leukemia—the most common pediatric cancer— from 80% to 5%, according to a 2021 article published in the Journal of Clinical Medicine.

“The centers that do research have higher, better quality numbers than the centers that don’t," said William Stigall, M.D., Cook Children’s chief research officer. “Research is one of those things that make you better at everything, and the robust space and technological capacity of the new tower will give us the capacity to do even more.”

Design Through the Eyes of Others
Planning and design of the West Tower is a collaborative effort between staff, patients and the design and construction teams.

“We have thought long and hard about what is important to us and our patients,” said Melodie Davis, DNP, RN, CENP, Director of PICU, ECMO and Dialysis at Cook Children’s. “For several months we have gathered input from our team and our patients. Bringing together evidence from literature on how PICUs can create healing environments with our lived experiences and collaborating with the construction team is truly a dream come true. Our patients, their families, and our staff have so much to look forward to.”

Today, Emerson and her family joined Cook Children’s executives, members of the board of directors, city officials and community supporters to turn the first shovels of dirt on the site of the future West Tower. Construction is expected to take five years.

“This groundbreaking of the West Tower is not just the laying of concrete and steel. It is a powerful continuation of the pioneering spirit,” said Rick Merrill, president and CEO of Cook Children’s Health Care System. “It is a tangible manifestation of our enduring commitment to the future, a bold step driven by the same courage and vision that defined Fort Worth from its earliest days.”

Fast Facts

• The West Tower will seamlessly integrate with the existing medical center floor by floor.
• The services/units moving to the West Tower will make way for the expansion of Hematology/Oncology as well as the Neonatal Intensive Care Unit, which will grow from 106 beds to 143.
• The Heart Center will gain two new operating rooms, a third cardiac catheterization laboratory for advanced diagnostics and interventions, 14 additional cardiovascular intensive care beds, as well as a new Step-down Unit for transitioning care as heart patients heal. All Heart Center inpatient services will be conveniently located on one floor in the new tower, from procedure prep spaces, to operating rooms and special procedure areas, to the Cardiovascular ICU and Step-down Unit.
• In addition to the Cardiovascular Operating Rooms, the West Tower will house eight new operating rooms. Two will be specifically equipped for Orthopedic surgery and two for Neurosurgery.
• The redesigned PICU will feature 56 private patient rooms with private bathrooms.
• Anticipating future growth, shell space will be included in the build.

Dr. Phillips shares her inspiring journey from growing up in Texas to becoming a doctor and a leader in the health care field, all while balancing family and the challenges of being a woman in medicine. 

Annie discusses how her mother’s path influenced her own career choices and the bond they share working together in healthcare. Together, they reflect on the challenges of motherhood, the importance of resilience, and the power of family support. 

Tune in on Spotify, Apple Podcasts or YouTube to hear a mother and daughter who are not only committed to improving children’s health but also to growing and supporting each other along the way.

I can’t tell you how many times I’ve heard this from anxious parents as their child is having his echocardiogram done. In reality, a murmur is something that is heard, not seen.

In a normal heart, the valves make noises as they close, the classic “lub-dub” attributed to normal heart sounds. A murmur is an extra sound, “lub-shhh-dub.” Most of the time the murmur is innocent or functional, some may call it benign.

Innocent murmurs are simply sounds we hear as blood flows through a normal heart. More than two-thirds of children with normal hearts will have a murmur at some point in their life. There are classic innocent murmurs that occur at various times throughout a child’s life, and usually they go away on their own over time.

Aside from these are the pathologic murmurs, or sounds that occur because there is a problem with the heart, maybe a valve that isn’t working properly, a hole in the heart, or a vessel that is narrowed.

Typically there are characteristics that help distinguish innocent murmurs from pathologic murmurs. Louder, more harsh murmurs are more characteristic of pathologic murmurs. The timing that the murmur is heard is also important. Innocent murmurs are typically heard when the heart is squeezing (this is a systolic murmur). In the case of innocent murmurs, there is usually no need for further evaluation. Innocent murmurs don’t “progress” to pathologic murmurs. There is no need for activity restrictions and no need for antibiotics when the child goes to the dentist. In the case of pathologic murmurs, follow up, activity restrictions, and whether the patient needs antibiotics when he or she goes to the dentist all depend on what is causing the murmur.

Having said this, not all systolic murmurs are innocent. Murmurs heard when the heart is relaxing (diastolic murmur) are usually pathologic.

An echocardiogram is a test that helps us evaluate the heart in the event that the murmur sounds concerning. The probe, or camera, sends ultrasound waves toward the heart . This time it is about what we see. The waves bounce off solid structures and the machine organizes the returning signals into a 2D picture, which is displayed on the screen. The study also uses color signals to help determine the direction of flow, and Doppler signals to determine how fast the blood is traveling across different areas of the heart.

The cardiologist uses all of this information to determine if there is a problem and a treatment plan for the child begins. And to think it all begins with those first anxious moments of listening to a child’s heart.

About the author

Deborah Schutte, M.D., is the medical director of Cardiology at the Cook Children's Heart Center. The cardiology team at Cook Children's has extensive experience in the diagnosis and treatment of pediatric heart care. They know the unique requirements of treating the growing hearts of children, including those with extremely rare and difficult conditions. Our areas of expertise include cardiac surgery,interventional cardiology, adult congenital cardiology, electrophysiology, cardiac testing and imaging,echocardiography, fetal echocardiography and cardiac anesthesiology.