Home is many things for different people, but where most people feel ‘at home’ usually comes with a sense of safety, security, and love. That is how Amber feels about Cook Children’s Medical Center. Although she lives more than 500 miles away from the castle with the blue peaks in downtown Fort Worth, she has a story that began (and ended) right where she felt the safest.

In early June, Amber, 40, found herself on the road traveling from Kansas to Texas. However, this was no vacation. She was headed to have open-heart surgery at Cook Children’s. You may be thinking, “But that’s a children’s hospital, how is that possible?”

Amber worked as a nurse at Cook Children’s from 2006-2014 on several different units at the medical center. In 2014, she and her family moved to Kansas, but she still had ties to Cook Children’s. Amber’s sister, Kathleen Powderly, M.D., is a pediatrician at the Cook Children’s Magnolia Clinic.

In the fall of 2020, Amber went for a routine checkup with her primary care physician and after running some tests, she learned she had a heart murmur. After getting an abnormal echo test and being referred to a cardiologist, she learned she had a subaortic membrane that had gone undetected.

“The symptoms I'd been having, I attributed it to turning 40,” Amber said. “I had just started exercising, so I thought some of those symptoms were just part of getting older.”

Knowing she would need surgery, Amber began her search for a cardiologist in Kansas. After that search led to a dead end, she called her sister in Fort Worth for help.

“I was talking to my sister, Kathleen, and she told me that there was a congenital heart program for adults at Cook Children’s, which I didn't know,” Amber explained. “I had been trying to find a surgeon in Kansas and didn’t have any luck.”

Amber’s sister connected her with Scott Pilgrim, M.D., medical director of adult congenital heart disease at Cook Children’s, who performed an evaluation and determined she was a candidate for surgery.

“Amber’s case was a little unique in that she was not diagnosed with her heart problem until later in life,” Dr. Pilgrim said. “Her diagnosis was a subaortic membrane or tissue that had developed underneath the level of the aortic valve. While not necessarily truly congenital, it is something that we do see in children as little as infants, all the way up into adulthood. Our surgeons are very versed in taking care of these types of problems. Her case fell right within our purview and right within our expertise of being able to handle that problem.”

Phillip Burch, M.D., a cardiothoracic surgeon at Cook Children’s, performed Amber’s surgery. On that early Monday morning in June, he met Amber in her hospital room and explained what would take place detail by detail.

“It feels just like coming home,” Amber said. “I loved it when I worked here. I thought it was one of the best places to work. I have always had every confidence in my fellow nurses and the physicians, and I honestly feel more at ease being here than even at the adult hospital back home. I know how skilled and compassionate they are here and I am very confident and happy to be back.”

There was not a dry eye in Amber’s hospital room as the medical staff prepared to wheel her back to the operating room. Amber embraced her husband tightly, as the nerves of being minutes away from open-heart surgery began to get the best of her. Next, she would embrace her sister. As her sister handed her a rosary, they prayed.

“Can I take this into surgery with me?” Amber asked. The medical staff agreed and moments later Amber was on her way. Her family was only able to walk so far before the waiting game began.

“Kathleen let me take her rosary because I’d left mine in my bag,” Amber said. “Faith has always been important to me. We have lost our parents and a sister, and I knew they were there with me. Kathleen even had holy oil with her that she put on me right before surgery and it was automatically calming to me.”

Amber’s successful surgery was followed by a short Cardiac Intensive Care Unit (ICU) stay before she was released to recover at her sister’s home. She spent four weeks healing, but the process was hard on her physically and mentally.

“I have my good days and bad days,” Amber said. “With open-heart surgery, Dr. Pilgrim explained there would be a great occurrence of depression and emotional instability, and I’ve noticed that. My emotions go up and down, one moment I'll be fine and all of a sudden I'll be crying. It's been a lot to take in and I find myself frustrated with not being able to do what I’m used to right now.”

She says while it was nice to be able to visit her sister and spend time with the family in Texas, it was hard to be away from her five children. She spent a lot of time on FaceTime with her children and played games with them on her phone to make the time pass by.

Amber was able to reunite with her family just in time for the Fourth of July, but being back home came with a hard adjustment period.

“It feels so good to be home,” Amber said. “I am still taking it easy. I’ve been using my arms more to push myself up and I even tried driving recently. I have been trying to use those muscles that I haven’t used in a while, I’ve just been sore.”

She says the best part of being back in the comfort of her own home was reuniting with her husband and children. The younger children were fearful and careful not to ‘hurt’ their mommy as they knew she was still recovering.

For now, Amber will continue to take it slow and regain her strength before she gets back to taking care of patients and working long nursing shifts. She says she needs more strength and endurance before she can be on her feet for a long time.

Amber and her sister, Dr. Powderly, say that while Amber gains her strength to get back to work, they will always reflect on the strong team of employees at Cook Children’s that made what could have been a scary experience, seamless.

“From the time that we walked in for registration that morning to when we walked out about nine days later, I can't even tell you the level of exceptional care that we received,” Dr. Powderly explained. “When you work at a place, you have a sense that what you provide is good, compassionate care. When you are then a patient or a family and you see it from the other side, it is just a total validation of why I’ve spent my whole career at Cook Children’s.”

Amber says she agrees with that sentiment, from being an employee to becoming a patient, she is thankful her story started and ended at home.

“Thank you would never be enough,” Amber said. “Every single person was amazing. They are responsible for giving me my life back, and there is no amount of gratitude in the world that I think would cover it. I am very blessed to have been a patient and been a part of an amazing team.”

Before Waylon could receive the heart surgery he so badly needed, his parents learned their surgeon was leaving the area. The Guidrys were suddenly faced with uprooting from their home in Fate, Texas (Rockwall County) and taking their very sick 6-month-old son out of town for surgery, most likely to either Houston or Chicago. Waylon was born at 27 weeks and 3 days with a rare heart condition called Tetralogy of Fallot, which creates obstruction to blood flow to the lung and is associated with a hole between the pumping chambers of the heart .

As they considered their options and prepared to pick up their lives, the phone rang one afternoon. It was Waylon’s cardiologist to tell them a new heart surgeon, Vinod Sebastian, M.D., would take on the case at Cook Children’s Medical Center in Fort Worth.

“Jordan and I didn’t know what to do,” Katie said. “We researched our options and we just couldn’t make up our minds. When we got the phone call, we were so relieved. Dr. Sebastian received all of Waylon’s history and was confident he could repair the Tetralogy of Fallot with one surgery and also spare his pulmonary valve, which traditionally has to be cut open and resected during this repair.”

The family arrived at Cook Children’s on Nov. 28, 2016 and Waylon underwent heart surgery on Dec. 14. Tetralogy of Fallot is a rare heart defect that occurs in about 5 out of every 100,000 babies.The surgery is a complicated one because the congenital heart disease results in four main congenital heart defects:

• Ventricular septal defect (VSD)
• Override of the aorta over the VSD
• Right ventricular outflow tract obstruction
• Right ventricular hypertrophy

ifelong monitoring is required due to the increased incidence of arrhythmia, exercise intolerance and reduced right ventricular function.

Often times when the surgery is performed, surgeons cut open and resect the pulmonary valve in the baby’s heart. If that happens, it usually means a heart surgery later in life to replace the valve. That was not the case for Waylon.

“As far as Waylon’s heart, his long-term prognosis is excellent,” Dr. Sebastian said. “Waylon is unlikely to need any further cardiac surgical intervention. In the past, Waylon’s condition was incurable. Even 10 years ago, the surgical repair routinely involved cutting open and resecting the pulmonary valve. His heart surgery is very gratifying because his heart problems are no longer an issue.”

Waylon and his family will face other non-cardiac health issues in the future, but for now the family feels very fortunate to have found Cook Children’s and Dr. Sebastian.

“He’s doing great now,” Katie said. “We are so grateful and blessed for having this opportunity to come to Cook Children’s and for our son to receive all the help he needs."

Waylon has been at  home now for more than two months and Katie is busy planning his 1 year old birthday party on May 30.

About Dr. Sebastian

Vinod Sebastian was born and raised in India and has pursued specialty training in the US in surgery, cardiothoracic surgery and pediatric cardiac surgery. During training he realized his passion of becoming a pediatric cardiac surgeon and the unique ability to provide life altering treatments to neonates, infants, children and adults with congenital heart disease.

He trained at Stanford University with Frank Hanley and VM Reddy in the field of pediatric cardiac surgery. During this time he trained in techniques of “single stage unifocalisation” and “extremely low birth weight cardiac surgery” at one of the largest practices in the world.

Dr. Sebastian is happy to be back in Texas at Cook Children's and providing pediatric cardiac surgery services in the Dallas/Fort Worth area.

In his spare time, he enjoys being outdoors, reading, watching cricket, tennis and swimming.

About Cook Children's Cardiothoracic Surgery Program

When it comes to your child, any kind of surgery is concerning. When that surgery is related to the heart, it can be a very frightening time. The cardiothoracic surgeons in the Cook Children's Heart Center are recognized for their skill and expertise. And, because they perform an average of 400 surgeries each year, they know how challenging it is for you and your child, and they will work closely with you to ensure you understand all your child's surgery will entail and the risks involved in order to provide the best plan of treatment. Click to learn more about the program.

Little Charlotte Friessen, 7 months old, arrived at Cook Children’s only 30 minutes prior and was rushed to the Cardiac Intensive Care Unit. She needed an echocardiogram on her heart so she could get the help she needed. She needed to relax to get the proper readings before treatment could begin. But Charlotte was afraid and unhappy.

The years of training and experience weren’t enough for Tiffany Cox, Jen Jones and Mary Brennan. They needed to find something new to calm Charlotte down to get the ultrasound imaging of her heart.

What to do?

“Charlotte hated the little Doppler on her. The three nurses were doing everything they could to help her,” Anne Friessen, Charlotte’s mom, said. “They were talking to her and nothing worked. Then one of the nurses said, ‘Let’s sing nursery rhymes. The nurses had a blast.’”

The nursery rhymes and lullabies worked to perfection. Charlotte stopped crying. At least until the nurses stopped singing to think of new songs. Each time they stopped, Charlotte began to cry. Soon, everyone hit their stride and even Lane Lanier, M.D., a pediatrician on the Cardiac Specialty Care Unit team, joined in on harmonies.

Cox spent most of her career working with adults in the Intensive Care Unit and Cardiovascular ICU. She says one of the things she loves about Cook Children’s that she couldn’t do in the adult world of nursing “is be silly and play.”

“I have found such a deep joy working with these children and babies. The needs of kids, the things that make them feel better, are usually so simple,” Cox said. “If a little spontaneous singing and making silly faces with my colleagues makes a child in the CVICU smile and feel better, I will do it all day long. I happened to be across the hall that day with my own patient, and heard this poor darling across crying her eyes out during the echo, and I really just wanted to come ‘play’ with my colleagues. They were trying everything to make her feel better.”

But come on - how many nursery rhymes do you know off the top of your head? “We even ‘performed’ a sing-song version of the theme-song rap from The Fresh Prince of Bel Air,” Cox said. The three of us and the patient’s mom are about the same age and grew up watching that show. I mean, who gets to do THAT at work?! I love this place.”

The singing also helped ease Anne’s mind for a little while too. After all, so much had happened in such a short period of time.

“They sang so many nursery rhymes,” Anne said. “I felt like I stepped into an episode of Grey’s Anatomy. They sang for the entire echo. It was really neat.”

A month earlier, Charlotte was taken to see her pediatrician in Andrews, Texas. During her well-child visit, doctors found she had a heart murmur. About three weeks later, a specialist in Lubbock diagnosed Charlotte with a coarctation of the aorta. This means a narrowing of the aorta, requiring the heart to pump harder to allow blood through the narrow part of the aorta.

The family was immediately rushed to Cook Children’s and immediately the care began for Charlotte.

“The nurses met us as soon as we got there,” Anne said. “Everyone was so great. They helped us handle the situation a little more peacefully. Up until then, I had been so wide eyed about everything that happened. We talked to Dr. Lanier and all the nurses, I felt so confident in their work. They were so happy that we chose their hospital. Dr. Lanier thanked us so many times for letting him take care of our daughter. It made me feel good. Even through this horrible situation, it gave me peace.”

The next day, Vincent Tam, M.D., Cook Children's medical director of Cardiothoracic Surgery at Cook Children’s Heart Center, performed the surgery to fix the aorta. Anne said she and her husband, Albert, felt comforted during the surgery. Since the heart murmur was detected, the family's church had been praying for Charlotte and now they were praying for everyone taking care for the little girl.

“So many people, from all over the place, were praying for Charlotte,” Anne said. “But they were not only praying for us, but our doctors and the nurses too. Everything just went so smoothly. We were home in less than a week.”

Other than getting her high blood pressure under control, which was expected after her surgery, Charlotte is back to her normal self. She’s sitting up, playing and holding her own bottle.

And while Charlotte may not remember her time at Cook Children’s, it’s a moment the nurses will never forget.

“It was a special few minutes to be able to serve her and her family in that simple way,” Jones said. “I love that being a nurse sometimes means lots of time management and critical thinking, and sometimes means simply singing nursery rhymes over a scared baby girl.”

The situation unfolded on Oct. 13th of last year. Now, nearly four months later, Children's Healthcare of Atlanta is using video from that game to stress the importance of life-saving training, which the hospital credits with saving Claire.

At Cook Children's Medical Center, there's an entire team devoted to making sure school nurses, teachers and staff know what to do if a student collapses. They're called Project ADAM, Automated Defibrillators in Adam’s Memory. Project ADAM helps schools implement a comprehensive plan to prevent sudden cardiac death. Part of the plan is to designate a team to write plans, conduct AED drills, and educate school staff on the warning signs and treatment of sudden cardiac death.

"We want to empower our school employees," said Laura Friend, Project ADAM Coordinator. "I always tell them 'Everyone is overqualified to do this. Anyone can save a life."

Friend spends at least three days a week traveling around the six-county region Cook Children's serves, teaching school staff how to do CPR and use an AED. From there, many nurses and athletic trainers go on to train the staff at their schools.

"A lot of people don't realize how easy it is. Every time I show a class the video of what CPR does for the brain, I hear people say 'Ohhh,'" said Friend.

The video Friend is speaking of outlines all of the steps needed to save a life in just under four minutes. It also shows how CPR keeps blood flowing to the brain, helping to prevent damage.

These steps even helped save a Keller ISD student recently.

According to the school district's website, a student at Timberview Middle School suffered a seizure and stopped breathing. Nurse Jane Danielson and the school's Code Red Team quickly sprang into action.

“I looked over afterward, noticing Mr. Morrow in a t-shirt. He had literally taken the shirt off his back to cover the student,” Danielson said. “Everyone stepped up in some way or another.”

Schools that complete the Project ADAM program are recognized as Texas Heart-Safe Schools.

For more information or AED training, please call 682-885-6755.

School physical season is one of my favorite times of the year for many reasons:

• It’s really fun to see kids grow up and get big over time.
• I love watching my patients’ personalities mature.
• I love that the visits become progressively more about my relationship with the child in addition to my relationship with their parents.
• For the most part everyone is healthy and happy.
• For most children, the promise of a new school year and new beginnings is exciting.

I have a few things on my agenda for each back-to-school checkup.

I want to talk about diet, exercise and sleep. I want to talk about how school went last year and what the plans are for the upcoming year.

But checkups are more than just about what I want. In order for the checkup to be a success, it must meet the goals of the child and parent. Parents are all over the place when it comes to their expectations for physicals.

Here are just a few examples:

1.“Let me get out my list.”

Whether your weapon of choice is a spiral-bound notebook or long thumb-scrolling iPhone lists, you know who you are. And frankly, I love you. Having a guide that directs the visit through any questions and concerns that you have is beyond helpful. It keeps me from having to talk about stuff that’s not important to you and wasting both of our time. So, bring it on, Listers, and I promise not to roll my eyes.

2.“I’m just here to get my form signed.”

No worries. That may be all you need and that’s great. In the meantime I can provide a quick screen for height, weight, body mass index, high blood pressure, heart murmurs, risk for sudden cardiac death, hearing and vision (and much more). I can also screen for drug/alcohol abuse, depression, attention problems and other school issues. “Here’s your form, thanks for coming in.”

But seriously, even in those children who come in with no apparent concerns or complaints, we do pick up health problems that need to be addressed to maximize your child’s ability to function well in school or compete at their best in their chosen activity.

3.“I’m not worried, but __________ wanted me to ask about __________.”

This is a tricky one. I’m totally cool with it, but it can be hard to get at exactly what the concerns is if that person isn’t there to ask questions. My advice … if that person is close enough to be providing this type of advice, they could probably come to the appointment. If the concern is coming from the child’s teacher, a quick note explaining what is going on can be really helpful.

Just don’t leave it up to chance that we can figure out what the problem is, especially if you don’t quite understand why they are concerned. Get specific information about the concern or have them come along.

I’m sure there are many more ways that parents think about their children’s checkup, but these are some common ones I notice.

No matter what, regular checkups are an important part of helping you maintain your child’s health. Good health increases their ability to be present for and to participate fully at school and extracurricular activities.

Which category do you fall in? Is there a different one you think I should include?

Sports EKGs are free through the month of August at specific locations in Arlington and Fort Worth. Cook Children's offers a $25 Sports EKG (electrocardiogram) screening test at our Cardiology offices in Mansfield, Southlake and Denton. Adding a sports EKG to your child’s physical can help detect most heart conditions that may lead to sudden cardiac arrest. Click to learn more. 

For school physicals, visit your local Cook Children's pediatrician. Click to find one near you. 

Clark couldn’t resist. Just like all the times she’s spent playing with some of the long-term ventilated patient population, actually getting on the floor mats along with the children. She says this helps keep her grounded in Cook Children’s nursing philosophy of caring.

It’s that attitude that helps someone like Clark stand out and be named as one of the 2015 DFW Great 100 Nurses, sponsored by DFW Great 100 Nurses Inc.

Clark was one of four Cook Children’s nurses named to the DFW Great 100, along with Melissa Irving, Bernadette Kelly and Elizabeth Leper.

The nurses were chosen based on the following categories - role model, leadership qualities, service to the community, compassionate caregiver and significant contributions.

Here’s a glimpse of the nomination letters sent on behalf of the recipients:

Melissa Irving, Teddy Bear Transport, Neonatal Transport Nurse

Melissa has been a member of the Teddy Bear Transport team since1985. Melissa was one of the first team members; she set the standard for the qualities that we look for in our nurses today: compassion, leadership, critical thinking, and stewardship. Being a transport nurse is not exactly the same as being a bed side nurse. You play many different roles, as the team is comprised of a nurse, RT and a paramedic. You have to be able to assess and relay the information to the accepting physicians without hesitation. Melissa is an excellent teacher and often provides her expertise to the referring staff to help with the care they provide prior to our arrival …

Melissa leaves a lasting impression on her patients. She becomes that beacon of hope for those she cares for; it could be the gentle voice or the assuring touch and the ever-present smile. She has consistently received cards and emails from the families that she has cared for over the past 30 years; she just connects with people …

Melissa is such a compassionate caregiver; she has an amazing affinity to calm those around her. She cares for the entire team, the referring staff as well as her patients. She treats every child as if they were her very own; it is her calling to provide the best care.

Bernadette Kelly, Cardiac Intensive Care Unit Nurse Manager

Recently the CICU cared for a patient (baby) whose mother never left the bedside. The patient was constantly fussy and crying secondary to his diagnosis. This family had been on the unit for a few weeks and was noted to have no additional family support and difficulty communicating with staff as English was their second spoken language.

(Kelly) was a resource nurse that day and did not have a patient assignment. She noticed the mom looked exhausted and took this as a time to discuss self-care. It was around 4 p.m. when she asked the mother if she had eaten. She said, “No, I can’t leave because he will cry if I put him down.”

(Kelly) knew due to his defect he could not cry for long periods without having status changes. This nominee volunteered to take the baby and he immediately went to sleep with her rocking him. Once his mother noticed her compassion toward her ill infant she left to go eat. When she came back, (Kelly) encouraged her to lie down and that she would still be available to hold him. Caregiver fatigue is often seen in parents that care for ill children. (Kelly) provided education to a mother with minimal family support about the importance of her eating and resting while her son was in the ICU. This young mother was so grateful for the time this nominee spent holding her baby so she could take care of herself. (Kelly’s) compassion for pediatric cardiac patients has been at the forefront of her career and secondary to her skill set, compassion and empathy, she was the PICU Employee of the Year in 2012.

Elizabeth Leeper, Perioperative Services Nurse Manager

(Leeper) is a compassionate caregiver to patients, families and staff. This nurse follows our philosophy of being a patient advocate and promoting a culture of serving others with respect for individuality and diversity. I have seen her make allowances for special needs patients collaborating with anesthesia and nurses.

For example, we have older autistic children that have extreme separation anxiety making it difficult for a nurse to push them back on a hospital bed to surgery. This nurse will step up and make special provisions for a parent to go back to the OR with the patient until they are asleep. This consideration promotes the organizations promise of a save environment for our patients and families. This candidate is very caring to staff in times of family emergencies, personal problems and need for time away from work.

Her kindness and concern for her staff make you feel you are a family member of hers. I have seen her cry and comfort her colleagues during times of lost loved ones, sick or injured children or spouse or simply having a bad day. I was stuck in Houston when my loved one was having surgery and we had to stay longer due to complications. Not only did she empathize and console me but helped me cover my shifts so I could stay and look after my loved one and not worry about my job.

Teresa Clark, Chief Nursing Officer

This nurse has been a role model for those around her for three decades. At our institution alone, she has practiced and offered sound leadership for over 25 years. She has both an advanced certification and a master’s degree. From my own conversations with this nurse, I know that she has always felt called to our profession … this calling is not something you can teach ...

While this candidate has a long history in nursing and one that illustrates her wonderful work, this past year’s contributions are remarkable. She was promoted to CNO following the retirement of a long tenured CNO. She demonstrated her strength as she held together a large nursing staff – encouraging teamwork, professionalism and collaboration during this change in leadership. She led efforts to finalize and implement a new professional development program, restructured our nursing org chart and updated our nursing practice model and nursing strategic plan. She has accomplished all of this while enrolled in her DNP program and battling metastatic breast cancer.

Still, I think her most significant contribution is her caring … which is really the defining characteristic of our profession. She cares about the children in our community, the staff she leads, the organization she works for and the profession she was called to serve.

This Great 100 nominee displays such dedication to our profession of healing hands and caring hearts that inspires me even today.