It’s not every day that you see a patient on extracorporeal membrane oxygenation (ECMO) walking around the halls of the hospital or taking a turn outside in a wheelchair. Children on this life-supporting device have very sick lungs. Most patients are fully sedated while ECMO assists their lungs in the exchange of blood gasses to properly oxygenate their body and its organs. But Emerson Bellucci is not most patients. 

“People would line the halls when she was up doing therapy,” said Ashlee Bellucci, Emerson’s mother. “Everybody wanted to see because they said this is not your typical ECMO patient. And I said, ‘Well, this is not your typical kid.’”

The 12-year-old from Fort Worth is one-of-a-kind in a lot of ways. Strong, resilient and mature beyond her years, Emerson not only beat the odds on ECMO, she survived a very rare and life-threatening reaction to the common antibiotic Bactrim, which she was prescribed to treat a staph infection she developed from cystic acne. The reaction is so rare, in fact, that few studies on the condition exist.

In 2023, physicians from Children’s Mercy Hospital and Clinics in Kansas City, Missouri, published a review of five cases of severe lung inflammation following the use of Bactrim, or trimethoprim-sulfamethoxazole. Like several in this case study, in the early days of Emerson’s reaction, her symptoms of fever, rash and difficulty breathing were initially thought to be the result of a viral infection. But her breathing became so labored that she was admitted to Cook Children’s Pediatric Intensive Care Unit (PICU) on August 18, 2024, where her care was overseen by a team of intensive care physicians and consulting specialists, including Javier Gelvez, M.D., pediatric intensivist, Krishna Pancham, M.D., pulmonologist, and Raymond Nkwantabisa, M.D., ECMO program medical director. In his 28 years of practicing medicine, Emerson is the first patient Dr. Nkwantabisa has treated for Bactrim-induced pneumonitis.

“Basically, Emerson developed severe inflammation in her lungs as a result of getting the Bactrim,” Dr. Nkwantabisa said. “This inflammation ended up causing pretty severe lung injury and damage to the air sacs in the lungs, resulting in pretty severe air leaks that required the placement of chest tubes to allow the air to escape from her lungs.”

Despite the chest tube placement and subsequently being placed on a ventilator, Emerson’s lungs were so inflamed that no amount of ventilator support could move air in and out of her lungs adequately to support her oxygen levels.

“We all need a certain amount of healthy air sacs to be able to breathe and exchange gases.” Dr. Nkwantabisa explained. “So when you get sick with, for example, very severe pneumonia where you don't have enough healthy open air sacs to exchange gas, we usually will intubate you and put you on a ventilator to breathe for you. But the ventilator only works when you have a reasonable number of healthy air sacs. If every air sac is injured or not working well, then the ventilator is limited in terms of how it can help.”

One day Emerson is a normal pre-teen dealing with all of the things that come with adolescent development and, within a matter of weeks, she’s on life-support with lungs so sick doctors began preparing her and her family for the possibility of needing a lung transplant.

“It's been the worst thing ever I could imagine,” Ashlee said. “But then there's been such high moments, you know, when I see her get up and walk with three ECMO lines in her legs. It's just miraculous.”

A Critical Lifeline

Think of ECMO as an external artificial lung. Tubes are inserted into large blood vessels, like the femoral artery and the femoral vein. Those tubes carry blue blood out of the body and pass it through an external machine that removes carbon dioxide and infuses oxygen into the blood. The oxygenated blood then flows back into the body, delivering vital oxygen to the patient’s organs. It is one of the most advanced forms of life support available.

There are very few patients that meet the criteria for remaining awake while on ECMO, says Danielle Ransonette, Cook Children’s ECMO co-coordinator. For one, the patient must have adequate pain control and tolerance without requiring complete sedation, and that doesn’t happen often, especially in children. The patient also has to be at a developmental level where they can follow directions and be reasoned with to protect the ECMO cannulae. Meeting the criteria meant Emerson had the opportunity to shoot a few basketball hoops, do physical therapy and to stand to hug her parents, all while on ECMO.

Rather than seeing the lung assist device as an obstacle, Emerson saw it as the lifeline that it was, and chose gratitude as her fuel.

“What definitely kept me going is I finally realized that it's my support,” Emerson said. “There was a huge chance I could have been dead without it. And I think that's definitely a huge reason that I'm still going.”

An Elite Force

Cook Children’s has a team of professionals specially trained to operate ECMO, and a member of this team is at the patient’s bedside 24/7 for as long as they are on the device.

Dr. Nkwantabisa likens this team to the military’s Navy SEALs, a team of elite special forces known for conducting high-risk and often covert operations. The ECMO team is called on when things are really dark and dire, he says. They are highly trained, highly competent and very low-key. Like the SEALs, these respiratory therapists and nurses are called away from their daily jobs and units throughout the hospital to accomplish a separate mission to care for an ECMO patient, sometimes for weeks or months on end. When all is said and done, they return to their respective units with little to no fanfare.

“It takes a special kind of person because, not only is it the wear and tear emotionally and physically that you go through, but there's also an intense amount of training that you come in and do over and above your regular scheduled hours,” Ransonette said. “It takes somebody who's truly dedicated, who really wants to further their knowledge and skills and really help take care of these kiddos.”

A Voice for the Voiceless

In late September, while still on ECMO, Emerson was transferred to a pediatric lung transplant center in Houston to prepare for a potential transplant. Once again, she defied the odds. On October 30, she was removed from ECMO and her transplant subsequently denied due to her recovery and progress. 

“It was just such justification for faith and God when we got the [transplant] denial letter,” Ashlee said. “Probably one of the happiest days of my life. Needless to say that that particular letter will be framed and placed at home.”

On December 12, Emerson was transferred back to Cook Children’s and admitted to the Transitional Care Unit (TCU) where her lungs continue to recover as she does daily physical therapy to strengthen her body.

“We consider [Cook Children’s] home,” Ashlee said.

Just as Emerson embraced ECMO as a lifeline, she and her family view her health and healing journey as one with purpose.

“We told Emmie early on when we were all trying to get a grasp on this just sudden change in her health, that God has a plan for her, and that she's got a story to tell when she gets through all of this,” said Robert Dancy, Emerson’s father. “We don't know what it is or how she's going to use it, but she's going to have a story to tell to help other people.”

Part of that story is the role parents and caregivers can play in supporting other children on ECMO. Having experienced ECMO while awake, Emerson was uniquely positioned to share her discomforts, such as feeling cold while on the machine, and how solutions like hot packs and warm blankets helped her feel more comfortable. Emerson hopes to use what she’s learned from the experience to be a voice for the voiceless, guiding caregivers in easing the pain and discomfort of those on ECMO who cannot communicate their needs.

And she has a message for other children facing life-changing circumstances and hardships.

“Never give up,” she said. “You will have days when you don't want to do anything because you're going to feel like you're never enough. But, no matter what, never ever give up. Keep the faith.”

Angel Alderete and Yolanda Orduno, of Odessa, know the challenges of navigating the health care system for a child with medically complex needs, especially when living hundreds of miles from the care their baby requires.

Alderete and Orduno’s daughter, Renata Sofia Alderete, was born Jan. 8 with a diaphragmatic hernia, or a hole in the muscle that separates the chest from the abdomen. The couple learned of the complication with their developing baby when Orduno was about four months along in her pregnancy.

A diaphragmatic hernia allows the abdominal organs, such as the intestines, stomach and liver, to creep into the chest.

“It’s very serious and a lot of times lethal,” said Bannie Tabor, M.D., a maternal-fetal medicine specialist and medical director of the Fetal Center at Cook Children’s Medical Center. “It can compress the lungs and prevent them from developing normally. It can push the heart over and prevent it from functioning. A lot of times we see it with other anomalies of the heart or other genetic anomalies.”

Babies born with a diaphragmatic hernia often need immediate breathing support followed by surgery to repair the defect. Some babies require assistance from a heart-lung device called ECMO (extracorporeal membrane oxygenation). But not every medical facility has an ECMO machine or pediatric surgeons that can perform the surgical repair.

Orduno’s obstetrician in Odessa initially sent her to a specialist in Midland who confirmed the diagnosis and told the family their baby would need a higher level of care than could be provided in their West Texas home. That’s when the family was referred to the Fetal Center at Cook Children’s Medical Center – Fort Worth.

As any parent of a child with a complicated medical condition knows, navigating the health care system can be complicated, time consuming and overwhelming. Add to that the need for care in an unfamiliar city, at an unfamiliar medical center, with unfamiliar doctors while hundreds of miles from home, and it’s downright daunting.

That’s where Cook Children’s Fetal Center comes in for parents facing a difficult diagnosis for their unborn child.

“The Fetal Center is like a health-care concierge service for high-risk moms and babies,” said Mandy Little, the fetal nurse coordinator that oversees Cook Children’s Fetal Center. “The goal is to have one point of contact that coordinates and schedules all of their referrals for specialists and tests.”

Helping to Make Patient Journeys Easier

Mothers with high-risk pregnancies or whose unborn babies have been diagnosed with a medical condition often need to see multiple specialty physicians and undergo multiple diagnostic exams and tests during their pregnancy. Many times, these appointments and tests need to occur in a specific sequence so that doctors have the scans and information they need to inform their diagnosis and treatment plan. If the family lives out of town, they’ll often need to relocate to Fort Worth well in advance of delivery.

“Once the diagnosis is suspected or made, they'll be referred to the Fetal Center to be evaluated and receive consultation with all the different specialists,” Dr. Tabor explained. “We'll make a plan for postnatal care and then typically we'll try to relocate the family about a month before their due date. They’ll usually stay at the Ronald McDonald House and then either await spontaneous labor or we'll pick a delivery date.”

Orduno and her baby needed to be followed by a radiologist, pulmonologist, cardiologist, and surgeon.

“I could not imagine being a parent and having a baby that needs a fetal ECHO, MRI, pediatric surgery and craniofacial, for example,” Little said. “If the Fetal Center wasn't here, that patient would most likely have to call those subspecialties or wait for them to call them and the appointments wouldn't be on the same day. There would be different contact people for every clinic, and there wouldn't be any coordination to them. If you are having to call back and forth between different clinics and trying to get appointments on the same day, it actually can be very difficult.”

The Fetal Center main streams this entire process, giving moms-to-be a single contact with a nurse coordinator who knows how to connect the dots between referrals, specialty physicians and their clinics, diagnostic testing, scheduling and even little things like knowing where to park when arriving for appointments.   

This can be especially helpful for families like Alderete and Orduno who live out of town.

Little and the Fetal Center team coordinated all of Alderete and Orduno’s visits. This included coordinating mom’s many referrals to multiple physicians and clinics, scheduling her appointments, helping the family navigate hospital parking and plan accommodations for their long-term stay prior to and following their baby’s birth.

“Once we were at Cook Children’s every day, the hospital kind of kept getting smaller,” Alderete said. “But the first time we showed up, it's like, ‘Oh my God, where do I go? What do I do? Where do I start?’ I want to say that Mandy walked us through everything and sent us as much information as she could for us to be able to find all of these places.”

Renata spent nearly three months in Cook Children’s Neonatal Intensive Care Unit. She underwent surgery to repair her hernia and an additional procedure to insert a feeding tube. Today, Renata is home in Odessa with her mom, dad and 7-year-old big sister. Her recovery continues as the family works to improve her oral feedings.

Alderete and Orduno encourage other parents to never lose hope.

“There's hope,” Alderete said. “They're really good doctors and nurses. Just follow the social worker or whoever you're in contact with. If you need anything, get with them and they'll guide you in the right direction. They won't let you fail. It's just a matter of being patient and having faith and moving forward.”

Orduno spent every day of Renata’s hospitalization at her baby’s bedside and says she learned to take things one step at a time.

“It's day by day,” she said. “Be patient and have faith and the day will come when the baby is ready to go home. You are really never alone. There is always somebody there with a few words that will give you hope and encouragement.”

Her mom, Hillary Richard, was concerned, but not overly. She kept an eye on her eldest daughter and monitored her condition. Haylee didn’t have a high fever and the pulse oximeter readings showed her oxygen saturation levels within normal range.

In fact, on Sept. 18, which was the seventh day of being sick, Haylee appeared on the mend, even requesting her favorite Chinese food for dinner. But, without warning, that rapidly changed.

When Hillary went to bed that night, Haylee was asleep, she says. Her daughter had taken a few bites of dinner, but she figured Haylee would wake up to finish it sometime later. But “she took a dive overnight,” Hillary says, adding “she went from OK to not—fast.”

She began feeling weird during the night, Haylee says, and couldn’t sleep. She propped herself up with a mountain of pillows trying to get comfortable. Intense pressure on her chest and lungs made it tough to breathe. She started coughing up bloody phlegm. She checked her oximeter through the night and saw the numbers going down each time. But she was too out-of-it to let her parents—who were sleeping one room over—know how she felt.

“I didn’t really realize what was going on, so I’d try to nod off back to sleep,” Haylee says. “I wasn’t fully present.”

When her mom checked on her the next morning, Haylee didn’t look right. She was extremely pale, Hillary says, and when she checked her oxygen saturation level, it had plummeted to a dangerous 38%. (The normal range is 95% to 100%, and anything under 90% is considered low.)

Her mother immediately called 911 and EMTs arrived within a few minutes. They put Haylee on oxygen and took her by ambulance to the Emergency Department of a local hospital. There, it was determined she had severe Covid-19 pneumonia and needed to be transported to a children’s hospital right away.

At first, they couldn’t find an available bed for her, Hillary says, until Cook Children’s Medical Center offered one. Hillary jumped at it and agreed to a helicopter transport. She wasn’t allowed to accompany Haylee but saw her off, crying as she watched the helicopter take flight with her child inside.

“That’s when it really started sinking in for me,” Hillary says, still emotional as she describes the beginning of Haylee’s battle with COVID-19. “Seeing her take off in that helicopter, and I couldn’t be with her? That was hard, you know? That’s my baby.”

Still in her pajamas, she and her husband, Keith, rushed home, threw some clothes in a bag, jumped back in their truck and barreled toward Fort Worth, the longest most “excruciating ride” she’d ever taken, she says. But the ride ahead was about to become even more rough for her and her family.

Not what a parent wants to hear

Inside the helicopter, Haylee knew her condition wasn’t good, she says, but didn’t grasp the gravity of it. She played on her phone, texting a friend a selfie with the message: “Guess where I am?” Her friend responded, asking what was happening, but Haylee wouldn’t be able to answer that text until almost two weeks later.

“I barely remember anything after arriving on the helicopter,” she says. “I couldn’t stand on my own. I was very weak. My body had kind of given out on me, and the nurses were having to help me into bed. And that’s the last thing I remember.”

Ryan Meyer, M.D., a pediatric intensivist at Cook Children’s, says Haylee was hypoxic (low oxygen levels in the blood) when she arrived. She was put on a BiPAP mask, a noninvasive machine used to oxygenate the blood, and placed in the Intensive Care Unit (ICU).

Initially, Haylee responded to the noninvasive measure, but less than 24 hours later, she began worsening, Dr. Meyer says.

“We take these things one hour at a time, one day at a time. And unfortunately, there came a point when noninvasive therapy was no longer sufficient for her,” he says. “We noticed her breathing was worsening, air movement on her lung exam was worsening and her CO2, meaning her ability to ventilate, was also worsening. Everything continued to decline, including her oxygen saturation.”

Physicians needed to intubate her and put her on a ventilator. But Hillary and her husband initially refused to intubate their daughter.

“You hear the horror stories about people with COVID being intubated and never coming off the ventilator,” she says. “That doctor looked at me and said, ‘Ms. Richard, Haylee’s really sick. If we don’t do this right now, she only has a 10% chance of making it.’

“Wow. I lost it. I just looked at him and said, ‘Save my baby. Please, save my baby,’” she says.

Despite the ventilator, Haylee’s condition continued to wane. In less than an hour, doctors decided she needed to be placed on extracorporeal membrane oxygenation (ECMO), a machine that allows patients’ blood to flow out through a tube into an oxygenator before flowing back into the body, similar to a heart-lung bypass machine used in open-heart surgery.

“Unfortunately, even after she was intubated, there was still great difficulty keeping her oxygen saturation levels at a satisfactory level,” Dr. Meyer says. “We’re not even talking about keeping them in the 90s—we’re talking about keeping them in the 80s.”

Her lungs had gotten too sick to support her oxygen needs, Dr. Meyer says.

“We see this in our teenagers who do wind up being intubated,” he adds. “They have very poor air movement, oftentimes they have white-out of their lungs, and are difficult to manage on a mechanical vent support, even on maximum settings.”

Before her daughter was put on the ventilator, doctors had mentioned the ECMO machine as another possibility if needed, Hillary says. But, in her mind, it was a last resort. Watching Haylee on the ventilator, taking note that her numbers weren’t improving, Hillary knew her daughter was in trouble, she says. Haylee’s respiratory rate remained at about 44 to 48 breaths per minute, she says, more than double the rate it should have been.

She and her husband were taken into a consultation room where a chaplain was waiting to pray with them. The doctor came in, telling them the ventilator wasn’t helping Haylee. They wanted to move forward with ECMO, she says.

“At that point, it’s whatever it takes to save my kid,” Hillary recalls. “He told us there was still only a 40% chance she’d even survive. Those were the worst odds. No parent wants to hear that.”

Eight Long Days

The first few days on ECMO her daughter’s condition remained touch-and-go, Hillary says, adding “she didn’t immediately improve.”

In fact, her daughter started swelling, which scared her. Haylee had an allergy wrist band on, and Hillary would stick her fingers between the band and her daughter’s skin to monitor the swelling.

“I started out with two fingers. It got to where my one finger would barely fit in there,” she says.

Helplessly waiting, Hillary and her husband found themselves staring for hours on end at Haylee and the blinking numbers on the machines connected to their daughter. They slept little and prayed a lot, she says. The doctors prepared them with the possibility Haylee could be on ECMO for six weeks or six months. No one knew for sure.

Hillary fretted over what Haylee might be feeling. They had sedated her daughter, “but they told us she could still hear us,” Hillary says.

“And if she could hear us, I worried about what was going on in her head—was she scared? I didn’t want her to be scared,” she says, even though as a mom, she was terrified seeing her child so ill.

On Day Five a bit of bright news came to the Richard family. An X-ray of Haylee’s lungs showed minor improvement. They shared the hopeful results to their “army” of family and friends who’d been supporting them since Haylee’s hospitalization.

“It felt so good to share some good news,” Hillary says. “So many people were concerned about her and were there for us. We had an army—and we still do.”

On Day Six, another good report came in. The top of Haylee’s lungs opened up. The next day, the left side started opening, Hillary says. The following day, after an X-ray showed her lungs partially cleared, doctors decided to take her off of ECMO.

Haylee stayed on ECMO for eight days—the “longest eight days I’ve ever lived,” Hillary says, adding her daughter stayed on a ventilator another two days after that. She was on ECMO for a shorter period than most patients, Hillary says.

“When they first took out the ventilator, she was able to whisper,” Hillary says. “I will never forget walking into her ICU room, and she says, ‘Hi, Mom.’ And it was like the day she was born all over again, you know. It was the most beautiful sound. I could have had a heaven full of angels singing to me at that point, just to hear her little voice again.”

Hearing Haylee’s voice “gave me that, ‘OK, we’re going to get through this. My baby girl is back,’” she adds.

She attributes Haylee’s recovery to Cook Children’s doctors, nurses, technicians—all who helped during one of her darkest times as a parent.

“They were amazing,” Hillary says. “They made us feel comforted in a time when it was hard to feel good about anything.”

Although Haylee was on the mend, their troubles weren’t entirely over. The medications Haylee received caused side effects, and her blood pressure and blood sugar had to be constantly monitored, Hillary says, but it was so much better than where they’d started out.

The Richard family wasn’t the only ones thrilled to see Haylee off of ECMO. The nursing and medical staff were as well, Dr. Meyer says.

“Haylee was definitely one of our more severe cases. Anyone who goes on ECMO is considered quite ill. You always worry once they’re going on ECMO—is this somebody who’s going to leave the hospital alive?” Dr. Meyer says. “It was exciting to be part of seeing her slowly, every day, get a little bit better, to the point we were able to actually begin trailing her off, then remove the tubes.”

“These times, for any family, are extremely crushing. This is a family who was very supportive of the nursing staff and the medical staff. That was greatly appreciated,” he says. “We’re very thankful that she had the outcome she did. Quite honestly, we feel blessed.”

Here Comes the Sun

Haylee doesn’t remember much about the earlier days of her hospital stay using a BiPAP mask or when she was placed on a ventilator and then ECMO. Most of the time, she was dreaming in “la la land,” she jokes. But it pains her to know her family and friends suffered through it.

“Hearing this, it’s heartbreaking. Even though it’s not my fault, I felt bad about it,” she says. “And I’ve apologized because it’s a hard thing for other people to see. I can’t begin to imagine what my parents and my sister (Bella, 12) went through this entire time.”

She does remember first waking up after they took her off the ECMO machine. Haylee couldn’t speak because she was still intubated on a ventilator, but she was able to write on a whiteboard.

“I was confused—I don’t think I was afraid,” she says. “I had no idea what was going on past showing up at Cook Children’s. Once I found out what had happened and how long it had been, I was grateful—I really was. And I was happy.”

She also recalls a few days later when she left the ICU and moved into Cook Children’s COVID unit. She felt like she hadn’t seen sunlight in days, she says.

“So, when they pushed my bed into the regular room, I looked out the window, and there was the sun, and I started crying,” Haylee says with a smile. “I was overwhelmed and happy just to see the sun.”

She was released Oct. 5 and the family celebrated by staying overnight in Fort Worth. The next morning, they went to a mall as an outing for Haylee, who was in a wheelchair. While in one of the stores she wanted to visit, she had “an odd spell” in which she giggled involuntarily, found it difficult to form words and her heart raced. The employees called an ambulance, but the spell passed, and she felt fine. The family headed home.

Back in Denison, they took Haylee into the house to see her grandma. About 30 minutes later, the teen lay on the floor in the throes of a full seizure. The family called 911 and landed at the local hospital Emergency Department before Hillary requested her daughter be sent back to Cook Children’s. Hillary again found herself watching medical personnel put Haylee on a helicopter bound for Fort Worth.

“But that time I knew she was headed for the right place, and no matter what was going on, they were going to help her. I didn’t want anybody else taking care of her because they were so good to us and so good to her,” Hillary says. “She wouldn’t be here today if it weren’t for Cook Children’s. It’s hard to say out loud, but it’s the truth.”

After three days of testing, Haylee was released. Everything checked out, Hillary says, although they don’t know exactly what caused her daughter’s seizure that day.

Haylee continues to recover, attending physical therapy and catching up with school work online. She sometimes gets overwhelmed mentally, she says, but feels good physically. She hopes to go back to school in-person in the spring and is preparing for the role of Cruella de Vil in her high school theatre’s upcoming musical production of “101 Dalmatians.”

She tries to see the good that came from her near-fatal brush with COVID.

“I wouldn’t be the person I am today if I hadn’t gone through that because it changed me,” Haylee says. “I’ve become a lot more thankful and grateful for everything in life, even the little things, like what I said about the sun. You don’t realize that you take those things for granted. The smallest things—showers, the sun, being able to stand, being able to see your family. It’s life-changing.”

Lessons Learned, A Story to Share

While Hillary is thankful all turned out well, she still feels bad for not letting her daughter get vaccinated even though she had begged her.

“There were a lot of ‘I told you so’s when she woke up,” Hillary says.  “We were scared as parents. There was so much mixed information, and it’s hard to know what is real and what is not. You go through that mind-frame of it’s not going to happen to us—it can’t happen to us. And then it did.”

While Haylee was in the hospital, Hillary says, she mentally beat herself up for not giving her the vaccine and not educating herself about it.

 “You don’t realize how bad it is until you’re in that situation. And then it hits you, and it’s terrifying,” she says. “Your job as a parent is to watch out for your kid and to take care of them and keep them away from harm, and I didn’t feel like I had done that. I felt responsible for her being in that bed.”

Since Haylee is now cleared to receive the vaccine, Hillary and her daughters plan to get vaccinated together at the girls’ upcoming doctor’s appointment on Jan. 7, she says.

Dr. Meyer says he’s a proponent of “getting teenagers vaccinated, especially if they have any other medical conditions, such as diabetes, cardiac conditions, asthma, things of that nature.”

“Even if you have an otherwise healthy teenager, I’m still a fan of getting vaccinated,” he says. “I don’t want to see you in our ICU. I don’t want to have to care for you here. We know now vaccinations are quite safe and very effective.”

Both Hillary and Haylee wanted to share their family’s story to give hope to others who may be facing a COVID hospitalization as parents or as patients. And perhaps their story will help others avoid what happened to them, Hillary says, so some good can come from it.

Hillary also wants other parents to know COVID is a real thing.

“It’s still out there,” she says. “I was the person that it would never happen to—and then it did. I want other people who feel that way to see our story and realize they need to be careful. They need to wear their masks. Use sanitizer. And get the vaccine.”

“You don’t want to go through what Haylee went through,” Hillary adds. “Nobody should have to go through that from a patient’s standpoint or a parent’s either.”

“These are a couple of toys for our PICU and TCU families,” she says, donning a plaid scarf and a Cook Children’s mask.

Coffee mug in hand, she speed walks to the door – partly to get out of the cold and partly to check in with the charge nurse as soon as possible before the COVID-19 Command Center call in 30 minutes. By her side is Lori Parrott, a pediatric intensive care unit (PICU) nurse manager, who’s helping carry in Christmas presents for patients.

“It sounds like we may have gotten two more overnight,” Melodie tells her as they briskly cross the sky bridge linking the garage and medical center.

As the director of the PICU and the Transitional Care Unit (TCU) at Cook Children’s Medical Center, Melodie wears a lot of hats. She’s a decision maker. A trusted leader. A master juggler. And she oversees a special wing dedicated to critically-ill COVID-19 patients known as 2North.

She quickly sets the bags down in her small, windowless office and heads to the nurses’ station without pause. Sitting next to a small Christmas tree, the charge nurse fills Melodie in on what happened overnight. A med alert, or medical emergency on the 3P, the stepdown COVID-19 unit, and a DKA, otherwise known as diabetic ketoacidosis. But the big news is the latest patient admitted to 2North. It’s a teenager transported in from another hospital. This patient makes eight on the unit, which has a total of 10 beds. This admission means her team will soon have to find more space to house the patients that are increasingly filling up the COVID-19 unit.

Back in her office, Melodie awaits her turn to speak on the Command Center call, a tri-weekly meeting for leaders entrenched in COVID-19 planning and processes. While sipping coffee, she listens as the director of infectious diseases rattles off the latest number of children who’ve tested positive for the virus. Today, it’s 112 in 24 hours, with 25 currently in the hospital.

Soon, it’s Melodie’s turn to share bad news.

“We may need to think about moving kids over to ‘A’ depending on what the continued census is, and especially if we get down to one bed,” she says as clearly and concisely as possible. “These kids continue to be quite ill and I don’t think any will go out today.”

Moving patients to ‘A’ means opening up a new COVID-19 ICU wing. The hospital is being stretched, but you wouldn’t know it by the positive tone of the call. People are optimistic; there’s hope on the way. They’re waiting on notification from Pfizer that the hospital’s allotment of the COVID-19 vaccine has shipped, which could happen at any moment.

We’re with Melodie this Wednesday morning, the week before Christmas, because she’s offered to show us something we have not seen before. She’s volunteered to take us inside 2North.

Inside the COVID-19 ICU

After the call, we follow Melodie down the hallway, her heeled-boots clicking on the confetti-laden floors. Big, purple double doors are ahead of us with 8-by-11, paper signs. They read, “Doors Must Remain Closed,” and “Isolation Garb for COVID (+) rooms,” with a long list of recommended attire: N95 or PAPR, surgical mask, gown, goggles or face shield, gloves, hair covering, and booties. Immediately upon entering, we see all of this gear in action. To the right, there’s a doctor towering over two nurses. All three are concealed inside in personal protective equipment (PPE) – yellow gowns, white masks and blue headcovers. The physician’s goggles resemble something you’d see on the ski slopes, but he’s not on vacation. He’s just left the room of a child who’s suffering a heart arrhythmia due to the virus.

It feels like we’ve just stepped inside a beehive or an ant bed. Every worker has a job and they’re busy doing it. The energy is fast-paced, but controlled. We watch as a respiratory therapist just a few feet in front of us straps on a PAPR, a small backpack that pumps air through a hose into a sealed helmet. Her speed and skill reveal that she’s done this many times.

To the right, a gloved nurse gives us a thumbs up through a window in a patient’s room. She’s talking to her colleague, who’s sitting at a computer on the other side of the wall. The two are communicating through a mini walkie-talkie type device called a ‘Vocera’ that’s clipped onto their scrubs.

“Can I bring you anything,” said the one sitting near us.

The nurse inside the room can’t leave. She’s halfway through a 12-hour shift, meticulously monitoring the many machines keeping her patient, a 12-year-old girl, alive. This is not a job for the weary. She’s an ECMO specialist, meaning she is precisely trained to take care of children who need extracorporeal membrane oxygenation (ECMO). This treatment is a last resort in which blood is pumped to a heart-lung machine that removes carbon dioxide and sends oxygen-filled blood back into the body.

When a child is on ECMO, two of these specialized nurses or respiratory therapists remain at the bedside at all times. Breaks for food and the restroom are limited. Layers of PPE keep them safe from the virus, but not comfortable. They wear two masks, a surgical mask on top of an N95, plus a face shield, gown, gloves and headcover. If they were soldiers, they’d be ready for war. Their enemy, though, can’t been seen – only the ravages it’s left on their young patient.

Melodie has asked if the girl’s mother would be willing to speak to us. She’s just woken up from the small couch/bed in the room and agrees to step into the hallway. Obviously exhausted, she tells us her name is Florence and that her daughter was diagnosed with COVID 11 days prior.

“She was having a mild temperature, so I brought her to the emergency room just so they could check her out, and we ended up here,” she said in a low, hushed tone. A steady beeping flows in the background.

“That visit was the best decision I made,” she said.

Due to the virus, Florence is the only person allowed to be in the hospital with her daughter. And she can’t leave the room, unless she is leaving the property. All meals are delivered. Anything she needs will be brought to the room for her.

We asked about her time at Cook Children’s, and how things have been.

“I love this place, and I love the staff,” she said.

Florence breaks down. She says everyone she has encountered at the hospital has treated her as if they were the only family there.

“That matters a lot,” she said with tears soaking into her mask.

Ready to return to her room, she shares one last thought: “The ECMO machine is a lifesaver.”

As she walks away, Melodie asks ECMO Manager Jill Pittman to suit up and join the two nurses inside the girl’s room. Shanna Senay and Sara Morgan are the ECMO specialists on duty today. They show us the machine that’s taken the place of the child’s lungs and heart. It’s a bulky contraption with multiple screens, tanks, and tubes, which are red with blood pumping through them.

“ECMO is allowing her lungs to rest and heal from the pneumonia, while we oxygenate her blood and circulate it throughout her body,” Shanna says.

She’s the nurse who gave us the thumbs up from behind the window.

“ECMO is the highest form of medical care that we offer at Cook Children’s, and it requires a lot of training,” said Jill, who’s been a nurse at the hospital for 23 years and now leads the ECMO program. “To be able to facilitate that and have an active role is very meaningful to me.”

ECMO patients are often on the machine for weeks, not just a few days. Because of that, ECMO specialists have to have endurance and the mental fortitude to keep going, even when there is no end in sight.

We’re curious and ask ‘Why do you do this?’

“There’s something special about being able to take care of these kids when they’re so sick and their parents can no longer give them the care they need. Then, it’s up to us,” Sara said with clean air being pumped inside her PAPR helmet. “It’s the last chance these kids have, so we fight every day, every night until they get to the point where they can get better on their own.”

Shanna nods in agreement.

“These kids are warriors. They’re why we push through and why we come out of here sweating bullets and having held our bladders for hours,” she says. “If it were my kid, I would want somebody doing the same thing.”

Back in the hallway, another group of 2North staff members gather to talk to us. One is a young nurse named MyKayla. She has bandages across the ridge of her nose and both ears to protect herself from her N95, which cuts into her skin and leaves sores. Five bandages total, but she’s not complaining. She says she loves taking care of children. It’s her calling.

A respiratory therapist named Joanna is with her, along with another nurse named Megan. They both echo MyKayla, saying they love what they do. We ask if they’ve ever felt scared. There’s a pause.

“Yes, I’ll say it. Especially with it affecting the Hispanic population, it worries me for my family,” says Joanna, who is Hispanic. “But, if God forbid, any of my family members get it and had to be in the hospital, I feel completely comfortable with our doctors, nurses, and respiratory therapists taking care of them.”

Megan jumps in.

“I’m not scared, but I have a healthy respect for it,” she says point blank.

Megan, tall and blonde, moved to Fort Worth a couple of years ago when her husband was sent to work at the Naval Air Station Joint Reserve Base. She was accepted into the competitive nurse residency program at Cook Children’s, and after six months was selected to work full-time in the PICU. She had just a few months under her belt before the pandemic hit. Nearly 10 months on 2North, she now seems like a seasoned nurse.

“I came into this profession knowing anything is game,” she says. “Since COVID, our teamwork as a unit has exponentially increased. It’s been stressful, it’s been frustrating, things are constantly changing, but we keep plugging through, trying to keep our spirits up, and the kids’ spirits up too.”

Off to the side, Jennifer Hayes has just exited a patient’s room. She’s a chaplain on the floor and is accustomed to the tougher moments of an ICU setting.

“The PICU is a hard and heavy place to work, and then you add COVID on top of that, it’s tough,” Jennifer tells us, her appearance failing to match her words.

She’s wearing a bright red shirt with a snowman on it. Her hair is short and brown, pulled up into two spunky knots. She explains her role, how she helps patients and families deal with difficult situations both emotionally and spiritually. She provides the same support to the PICU staff.

“I’m trying to bring joy and fun into the unit,” she says while showing off her fanny pack, creatively decorated to look like a taco for a contest she spearheaded.

She also tells us about the ‘COVID Café,’ a space she established on the unit for worn-out frontline staff to retreat to during their shift. They can watch TV, enjoy the snacks or one of the many word searches, games, or funny memes she’s left at the half-dozen socially distanced tables.

Jennifer is the caretaker of the caretakers, and one of the many moms on the unit. She, like everyone else on this floor, has had to change the way things are done at home. She explains how her 2 year old always wants to hug her as soon as she walks in the door, but can’t for fear that some microscopic particle of COVID-19 has made the trip home with her.

“It has been a big change and has created a delicate balance where we are trying to keep normalcy for our kids, but also we have to be mindful keeping them safe,” she says.

Ashley Miller, the charge nurse we saw filling Melodie in early this morning, agrees. She is also a mom and shares how her 14-year-old son watches the news and worries. She oversees the entire 43-bed PICU and is in charge of admitting each patient. She says the now is by far the worst they’ve seen of the pandemic.

“It’s a reality that kids can get COVID and they can become very, very sick,” she says. “It’s definitely a change from March, we’re seeing many more now.”

While we’re talking, Melodie reminds us about an 11:30 a.m. meeting we’re due to attend. It’s with PICU leaders, and they have a lot to discuss.

Leading During a Pandemic

We make our way down to the basement of the hospital where five women have gathered in a classroom. More are on a conference line. Their top concern today is overflow for COVID-19 patients.

“It’s hard to put a target on when we should open a new wing, because we don’t want to turn around and close it if our census lowers,” Melodie tells the group, which is spaced out around the large room. “But once we get to nine patients, that’s it, and that can change in five minutes.”

Until recently, 2North only had two to three patients at one time. Now, it’s pushing capacity. Finding more space and beds is not an issue. The problem is staffing. With a new COVID-19 ICU unit, more staff will be pulled in to take care of the children in the beds. That’s worrisome because burnout is already top of mind for these leaders. They will do anything to prevent losing essential caretakers. That includes Linda Thompson, M.D., medical director of the PICU, who’s sitting in the corner of the room. She is so concerned about burnout, she offers up her vacation home on the Texas coast for fatigued staff to escape to with their families. Everyone here is willing to do whatever they can to prevent from losing people in the pandemic.

“Ding, ding, ding – Ashley Miller.”

This is the sound of a call coming into a Vocera. Ashley, the charge nurse, is alerting the leaders that another COVID-19 patient is being admitted as they speak. Their discussion about overflow may take shape sooner than expected. They hurry to get through their agenda, knowing there is work to be done on 2North.

After the meeting, we part ways with Melodie. She’s off to do what she does best, leading her team during a challenging situation. We’re gathering our cameras and equipment to capture another area we’ve never seen, the step-down COVID-19 unit known as 3Pavilion, or 3P. Until today, 2North and 3P had been restricted to ‘necessary’ personnel only. Somehow, we got lucky, and are being allowed inside both.

Inside 3P – the COVID-19 Step-Down Unit

We take the nearest elevator to the third floor. As soon as we step off, Valerie Badgett, the day nurse manager, is waiting for us. She’s worked on this unit for 17 years and recalls the day this past March when administrators gathered everyone into a break room and told them they were about to be taking care of COVID-19 patients.

“This was a specialty med surge unit prior to COVID. We treated patients with renal disease, from acute kidney failure to children who received kidney transplants, and GI patients,” she explained. “When they told us we were going to become a COVID unit, people were understandably nervous.”

The administrators explained that their floor has a unique airflow system, which allows air to vent directly outside. This prevents airborne viruses from circulating through the ventilation system.

Valerie tells us more about that day in March, and how they had to quickly move their patients to other floors. They thought they had days to prepare for their first suspected COVID-19 patients. In reality, they had just hours before seven children under investigation for COVID-19 were admitted to their floor.

“There were a lot of questions at first because we didn’t know enough about it,” Valerie said. “But Dr. Whitworth came over the very next day and eased a lot of people’s concerns. She has always been there to answer our questions.”

Mary Suzanne Whitworth, M.D. is the medical director of Infectious Diseases at Cook Children’s. Valerie credits her composed leadership for helping the staff on 3P not only accept the challenge ahead of them but take it on as a mission they were called to serve.

Unlike 2North, the atmosphere on 3P is calm. It’s quiet and much larger than the ICU. Patient room doors stretch down two long hallways lined with purple and blue carpet. The only thing that visually sets this floor apart from other non-critical areas of the hospital is the donning and doffing of PPE happening all around us. Doctors and nurses are suiting up in PAPRs, gowns, goggles, and gloves before entering rooms. Knowing this team didn’t necessarily sign up to take care of COVID-19 patients gives us a whole new respect for them.

“It has brought a lot of new diagnoses that we didn’t take care of before, chemo patients, newly diagnosed diabetes, a lot of patients that we’ve gotten have come in the emergency department because they’re sick from something else, and then coincidentally they test positive for COVID,” Valerie said. “Many of our nurses have become certified in chemotherapy so they can take care of the patients we’re now seeing.”

Hearing how this unit has stayed together the past 10 months, even when they had opportunities to abandon ship to work in other areas, is inspiring. They’ve overcome fear, learned how to care for an array of injuries and illnesses, and built an unbreakable bond. They’ve proven resilient, and their strength is needed now more than ever.

“We have 20 beds on this floor, and today we have 17 patients,” says Ashley Kovacev, the night nurse manager who’s volunteered to give us a tour.

She walks us down the hallway, pointing out the negative pressure rooms they never had to use for isolation purposes until this year. We round a corner and an alarm is dinging. A light overhead flashes. Ashely peeks into the room.

“Are you ok?” she asks.

Inside, a mother needs help getting her child to the restroom. Ashley calls for a nurse.

Families on 3P rely on the staff for everything, including food and water. Like 2North, only one parent at a time is allowed per patient and they can’t leave the room unless they are leaving the hospital. Because of COVID-19, the floor’s family lounge and playroom are closed. Patients and parents are stuck in their rooms, but everyone tries to make the best of it.

One small glimmer of hope is the child life specialists and music therapists who don and doff PPE to deliver activities to the children’s rooms. We spot one, a young woman with long blonde hair, sitting alone in the closed playroom. She’s teaching a patient how to play guitar via Zoom, just one of the many creative ways the child life team is engaging isolated patients.

To the left, down a short hallway, a woman in a blue scrub top and black pants is pushing a large cart.

“That’s Rebecca. She’s been absolutely phenomenal since day one,” Ashley says. “We tease her because she literally wipes down the walls non-stop.”

Rebecca is an environmental services worker. She looks uncomfortable as Ashley gushes about how she has kept the team safe throughout the pandemic.

“Not a single person here has contracted COVID from our unit,” says Ashley, crediting Rebecca for their protection.

Reluctant to accept the praise, Rebecca says simply through her mask, “We have to take care of each other.”

As we near the end of the tour, a food services employee in a mask and goggles delivers a plastic bag full of Styrofoam containers to the nurses’ station. It’s just one of the many trips he will make to 3P today, delivering three meals to each of the 17 families on the unit. He, like everyone else we’ve met, smiles as he drops off the food.

It’s no small feat for any of these people – the changes they’ve adapted to. The anxiety of the unknown. The courage they’ve displayed. After spending eight hours behind-the-scenes of Cook Children’s COVID-19 units, we can attest to the following statement:

“Our staff truly honor our ‘Promise’ every single day,” Ashley says holding back tears. “It makes me emotional. These people are so resilient. They care for these kids like they’re their own. It’s truly amazing.”