By Daron Aldridge

For Heather Giattini, RN, Cook Children’s holds a special place in her heart. Less than two years ago her two-and-a-half year son, Brooks, had his first open-heart surgery to address his aortic stenosis (a narrowing of the heart’s aortic valve). It was then that she witnessed firsthand the power of the love and caring Cook Children’s staff and physicians give to their patients and families.

Even though she was a nurse in the adult hospital world at the time, she no more got home from discharge, looked at her husband Matt and said, “I HAVE to work there!” The opportunity finally presented itself and Heather joined Cook Children’s as a cardiovascular surgery nurse earlier this year.

Her desire to work here is simple. She explains, “I wanted to be a part of making people feel the way they made me feel. From our doctors – Dr. (Vincent) Tam and Dr. (Lisa) Roten – to the entire staff that took care of us, it was all amazing. This is where I knew I belonged.”

It wasn’t just Heather who belonged here. As fate would have it, following a recent routine checkup with Dr. Roten, his parents were faced with the reality that a now 4-year-old Brooks would need another surgery. Even though they had hoped it would be years before he would need another surgery, Heather and Matt found solace in the fact that they knew Cook Children’s was the place Brooks belonged also.

But this time, the surgery would be a little different. Thanks to organ and tissue donations and the hand-in-hand work of Cook Children’s and CryoLife, Brooks would be getting a new valve in his heart that will hopefully mean this is the last surgery this young boy will need for decades.

The tissues, like the ones that are helping save Brooks’ life, are donated by families, who have lost loved ones and want to bring joy and hope out of their loss. Through CyroLife, these donations are cryopreserved for 10 years. This means they are able to positively influence and possibly change the lives of children, who aren’t even born yet. When these families make such a decision to be organ and tissue donors, they truly do “Donate Life.” Please visit donatelife.net to learn more about the life-saving importance of the selfless act of organ and tissue donation.

To celebrate the monumental impact such donations can have on patients, Brooks is the first proud recipient of the Donate Life: Recipient pin from CryoLife. The pin, along with similar pins that surgeons and nurses wear, are a quick way to show the world that organ and tissue donations can save lives.

As Brooks’ dad Matt said, “Most people think about the large organs when they think about donation but tissue donations may be small in size but can have a huge impact on lives.”

Amy was born with hypoplastic right ventricle, severe tricuspid valve stenosis and transposition of the great arteries and had a shunt (Blalock-Taussig (BT) placed at a little over a year old. At the age of 3, her family took her to Birmingham, Ala. for the Fontan procedure. The Fontan is the last of a series of three surgeries to rebuild the heart and redirect the way the blood flows.

The fact that Amy had to travel for the Fontan shows how far the Cook Children’s Heart Center program has grown over the past three decades. This was before Vincent Tam, M.D., took over as medical director of Cardiothoracic Surgery. Today, he diagnoses and treats patients with some of the most difficult heart and cardiovascular defects.

Over the past 30 years, James "Hud: Allender, M.D., Susan Hess, M.D. and now Scott Pilgrim, M.D., all served as Amy’s cardiologist.

“I finally graduated to Dr. Pilgrim when he began working at Cook Children’s since he specializes in adult congenital heart disease,” Amy said. “I had the conversation with him about a safe way I could become a mother. He suggested IVF (in vitro fertilization) with a surrogate would be a safe option. Since I have lived a very healthy and normal life as a cardiac kid, I thought this would be a safe option to keep my good health intact. I didn’t want to put myself or my child in danger.”

Dr. Pilgrim believes one of the more rewarding aspects of his job as the medical director of the Adult Congenital Heart Disease Program at Cook Children’s Medical Center is making sure that adult survivors of congenital heart disease have an opportunity to realize their desire to start and raise a family.

“While pregnancy in this population is certainly not without challenges, a safe and healthy pregnancy and delivery is entirely possible for most women with congenital heart disease with appropriate oversight,” Dr. Pilgrim said. “Pre-pregnancy risk assessment and management of high risk pregnancies due to maternal congenital heart disease has become an increasingly important aspect of our program. Understanding that individuals with congenital heart disease have an increased risk of having children with congenital heart disease underscores the importance of fetal screening for these high risk mothers”.

Amy’s sister-in-law, Amanda, agreed to become the surrogate. Early in her pregnancy, doctors found that Rusty and Amy Suson’s baby girl would also face a heart defect. A fetal echocardiogram performed at Cook Children’s found something wrong with the baby’s pulmonary artery. Dr. Tam met with the family and moved forward to a 39-week induction.

As soon as Madilyn was born, she went straight to the NICU at Cook Children’s.

Amy was relieved to find that Dr. Pilgrim was on call that day to care for her daughter. Dr. Pilgrim checked on Madilyn, then ordered and read her first echocardiogram. He then made the diagnosis of pulmonary atresia with a ventricular septal defect (hole in the wall of the heart). “It was on that day that I asked him if he would be willing to take Madilyn on as a patient too and he agreed,” Amy said.

Madilyn had her first open heart surgery at 3 days old and will have another one likely in April.

“Eventually, Madilyn and I will have mother-daughter joint cardiac checkups,” Amy said. “As a patient of Cook Children’s and part of their cardiac family, I knew Madilyn would be in good hands. The team in the Cardiac ICU and step down did an amazing job. I know that Madilyn is getting the best possible care.”

The new three-dimensional lab for the planning and printing of congenital heart disease (3D aPPROaCH Lab) uses advanced technology to support pre-surgical planning and family education for patients with complex heart conditions. This is accomplished through the use of both 3D virtual viewing and 3D printing. Cook Children's is one of the only pediatric healthcare facilities in the United States to combine these technologies. This cutting-edge technology allows cardiologists and cardiothoracic surgeons the ability to fully understand a patient's complex heart defect and plan their procedures and surgeries to the finest of details. It also allows for doctors to practice and perform procedures prior to the patient entering the operating room. Click here to learn more.

When Patti Wilson was pregnant with her daughter Melanie in 1980, health care and technology looked a whole lot different than it does today.

Routine sonograms did not exist and there was no way for expectant mothers to know whether anything was wrong with their baby until the child was born. Up until labor, Patti’s pregnancy had been text book and no one had any reason to suspect anything was wrong with Melanie.

However, on June 3, 1980, when Patti went into labor, everything changed.

Doctors began noticing Melanie’s heart would stop every time Patti had a contraction. They originally thought the umbilical cord was wrapped around Melanie’s neck, but after an emergency C-section was performed, Patti and her husband learned their newborn baby girl was facing a life-threatening diagnosis.

The day after Melanie was born; she was transferred to Cook Children’s, which was called Fort Worth Children’s at the time. The prognosis Melanie’s parents received was bleak.

At 5 days old, Melanie had her first heart catheterization. This first procedure allowed doctors to diagnose Melanie with a combination of congenital heart defects that included transposition of the great arteries, ventricular septal defect and pulmonary stenosis. She would need multiple procedures to fix the structural abnormalities in her heart but the catheterization temporarily fixed the problem to postpone surgery as long as possible.

Melanie was a year old when she had her first open heart surgery at Cook Children’s. The procedure was called the Rastelli procedure and the surgeon performing the surgery had practiced under Giancarlo Rastelli himself before coming to Cook Children’s. Throughout her life, Melanie had additional surgeries at 3, 10, 16 and 27 years old. She also underwent multiple heart catheterizations and procedures.

Over the years, Cook Children’s has become a home away from home and Cook Children’s cardiologist Richard Readinger,, M.D, , who has followed Melanie since she was 8 years old, feels more like a family member a doctor.

When asked about how her diagnosis affected her life as a child, Melanie said it was all she ever knew. She learned about her diagnosis as a child learns most things – by experiencing it as time goes on. At age 11, James “Hud” Allender, M.D., another Cook Children’s cardiologist, sat her down to explain that her mom may not always be with her if there is an emergency and she must know and understand her own diagnosis. It was at this point that Melanie remembers truly understanding what she had been coping with up until then.

Since her last procedure at age 27, Melanie has had no complications. Even though she’s an adult, she continues to be followed by cardiologists at Cook Children’s who are skilled in treating patients of all ages with congenital heart defects. With the continued advancements in pediatric cardiology, children with congenital heart defects are not only surviving, but growing up to become adults who lead rich, full lives. Cook Children’s Adult Congenital Heart Disease program is one of only a few formal programs nationwide to offer inpatient and outpatient care for patients from the moment they are born all the way into adulthood.

But the story doesn’t end there.

Due to Melanie’s diagnosis, she was told that pregnancy would likely be too risky. Her doctors were unsure if her heart would be strong enough to carry a baby to term.

But, some things are left to fate and Melanie began to have vivid dreams that she was feeding twin girls that she knew had to be her own. She would wake up absolutely bewildered because she knew it wasn’t a possibility. Fast forward a few weeks and Melanie and her husband found out the shocking news that she was pregnant.

Melanie immediately made an appointment with Dr. Readinger where he performed an EKG, echocardiogram and an exam and said, “It’s the strangest thing. Your heart appears to be in the best shape it’s ever been in. If you’re going to have a baby, now is the time.” The sonogram revealed that Melanie was actually pregnant with twins as her dreams suggested. Unfortunately the one baby’s heart never fully formed and at 8 weeks another sonogram revealed that the baby had been absorbed.

Having wanted to create a girl name from two men’s names, Melanie and her husband already had a plan when they found out 15 weeks into the pregnancy that they would have a baby girl. Rossleigh is named after her great grandfather, Ross, and her grandfather, David Lee.

Melanie’s pregnancy went smoothly physically, but it was incredibly draining emotionally. At the beginning, Melanie and her husband felt as if they were only receiving disheartening news. At week 18, the couple was informed that there was an issue with Rossleigh’s heart and the perinatologist could only see one kidney. Luckily, her second kidney would be detected on a later sonogram.

At week 22, a fetal echo was performed at Cook Children’s where cardiologists could diagnose Rossleigh’s heart defect while she was still inside Melanie. Fetal echocardiography didn’t exist when Melanie was born. A fetal echo allows doctors to see a baby’s heart while it’s still in the womb. Doctors can make the diagnosis and work with the surgical team to come up with a treatment plan even before birth. This technology gives the gift of time, both for the surgical team and for the family.

When the fetal echo was performed, Rossleigh was originally diagnosed with Truncus Arteriosus with a ventricular septal defect but at birth, that diagnosis would change.

Rossleigh Claire Dewey was born on Sept. 26, 2012 and was immediately transferred to the Neonatal Intensive Care Unit at Cook Children’s. An echocardiogram would show that her diagnosis was actually Tetralogy of Fallot and pulmonary atresia. Only five days after birth, Vincent Tam, M.D., Cook Children’s medical director of Cardiothoracic Surgery, operated on Rossleigh’s heart. She stayed in the hospital for 29 days, ironically, in the exact same surgery recovery room that Melanie had stayed in after her most recent surgery, and has had no procedures since. She could end up needing another procedure in her teenage years but right now, she is living life like any other 5 year old.

The bond between a mother and daughter is always special and unique, but Melanie and Rossleigh’s bond is even more unique because of their shared experiences.

These days, because both Melanie and Rossleigh are still being followed by Dr. Readinger, they have annual mother-daughter cardiology appointments. Melanie said that while one is getting their echo, the other will hang out in the waiting room and vice versa. A unique mother-daughter experience that most don’t have to share but they make the best out of a tough situation.

The Dewey family is forever grateful to Dr. Readinger and the care and compassion that he has shown both Melanie and Rossleigh throughout their medical journey. Melanie bragged on his ability to appropriately explain and literally sketch out the most complicated situations to both generations of heart patients.

Even though nearing retirement age, Dr. Readinger wanted to be the one to treat Rossleigh so that he could be involved in both of their care. He has made a great impact on their lives and the family is forever thankful.

As Melanie reflected back on everything she’s been through, she explained, “I have such a unique viewpoint going into this situation. I’ve been on both sides, as a patient who was scared to go into their own heart surgery, as well as the mom of a child with heart issues. Both are frightening in their own ways but I was able to gain the courage to push through these circumstances because of my faith and an amazing team of skilled doctors in nurses.”

As we look back over Cook Children’s 100 year history, Melanie’s story is proof of not only how many medical advancements have been made but how things are literally changing each and every day. If Melanie was born 10 years earlier, the Rastelli procedure wouldn’t have existed and she would have died as an infant. However, if she was born 10 years later, she would have been able to undergo a newer procedure, at the time, called the Nikaidoh procedure where they could easily switch the two sides of the heart. It’s likely she would have needed just the one surgery rather than five. Plus, she would have had the added benefit of the experience of Dr. Tam and Hisashi Nikaidoh, M.D, who created the procedure, and have the largest combined experience of aortic translocations in North America.

These advancements are even more apparent with Rossleigh’s journey thus far.

All of these medical advancements are not taken for granted at Cook Children’s and we know that we could not have made these strides without your help. Our generous donors and supportive community allow us to help Melanie and Rossleigh to live their lives to the fullest, despite their complications. As you join in our celebration of 100 years, remember who we are really celebrating – patients like Melanie and Rossleigh, and also, you. Thank you for being the 1 in our 100.

Celebrating Cook Children's Centennial

Cook Children's is turning 100 and will be celebrating all year! Don't miss out on the fun throughout 2018. Enjoy unique stories, parades, special guests, and community events across Fort Worth. We hope that you can share in some our celebrations because you're the 1 in our 100!

Celebrate with us

On Feb. 2, 2016, Ashleigh and her husband David cried tears too, but this time it was waiting for their little boy to get through heart surgery.

It's amazing how far they all have come. 

When she was 20 weeks pregnant, Ashleigh Wilford went with David, her husband, for what was supposed to be a routine sonogram.

But during the visit, things didn’t go as planned or even hoped. The sonogram detected a possible heart condition. The concerned couple called Lisa Roten, M.D., a pediatric cardiologist at Cook Children’s Heart Center, to schedule a fetal echo cardiogram. Dr. Roten and her Fetal Echo Program team confirmed the initial diagnosis of a transposition of the great arteries.

Transposition of the great arteries is a rare heart defect in which the baby’s two main arteries leaving the heart are transposed. Because of this, he wouldn’t be able to properly oxygenate his own blood.

Since she found out about her baby’s diagnosis early in her pregnancy, Ashleigh was closely monitored and cared for by the Heart Center staff at Cook Children’s before her son was born.

Now, a plan could be put in place to prepare for the birth of their little boy – Graham.

“Throughout the pregnancy, they were preparing for him, which was a big burden off of us,” Ashleigh said.

Before the birth, however, both admit that there was no way to be ready for what was to come.

“I don’t think we really knew what to expect. We just thought ‘he’s going to be born, they’re going to fix it, and he’s going to be fine,’” David said.

After carrying Graham full term, the day finally came for Ashleigh to give birth to a 7 pounds, 9 ounce boy.

“I’ve wanted to be a dad for a long time. When I saw him for the first time, you’re just taken away by that moment because you see that new life,” David said.

However, their first few moments with Graham were fleeting. Within minutes, he was whisked off to the Neo-natal Intensive Care Unit at Cook Children’s.

“We had about five minutes with him. Talk about having a moment as a dad. David went straight from the delivery room to Cook Children’s and had to be strong for Graham and for all of us,” Ashleigh said.

In the first few days of Graham’s life, things seemed to be going fairly well. “Everyone kept saying ‘he looks better than expected after everything he'd gone through,’” David said. At 6 days old, Graham was ready for surgery with Vincent Tam, M.D., medical director of cardiothoracic surgery at Cook Children’s.

However, on the morning of his surgery, something unexpected happened. But this time it was a welcome surprise. Dr. Tam and his team told David and Ashleigh that they had a very important role that day, a role that ended up being an emotional, beautiful moment during such a scary time.

“One thing that we didn’t know we had the opportunity to do, but that the staff here was very adamant about, was us holding him before surgery,” Ashleigh said. “Until that point, holding him was too dangerous, due to the amount of lines that were helping keep Graham stable. They made sure that we had a good hour each. That was invaluable.”

Although Graham will not remember that moment like his parents will, he responded in a way that amazed everyone.

“Because of the medicine, you could tell he just wasn’t feeling very good. He was clenching himself in pain,” David said. “But when we would hold him, his numbers would level out. You could tell that he felt us.”

But then Graham was taken away from them, and the fear settled in.

“They gave us hourly updates,” David said. “Then they called at one point and said ‘everything is still fine, but we did another echo and saw something we want to go back in and fix.’ So they had to put him back on bypass.”

The entire surgery lasted about nine hours. But as hard as that day was for them, Ashleigh and David agreed that it was even more difficult to see Graham after the surgery.

“When we went back in after surgery, there was a piece of mesh over his chest, but we could see his heart pumping,” Ashleigh said.

“He was pale and cold… it was like he wasn’t alive,” David said. “Seeing a little 6 day old baby look like that… it was tough.”

However, the staff surrounding David and Ashleigh constantly made them feel reassured and comforted.

“It was the worst day of our lives,” Ashleigh said. “But even while experiencing the worst day of your life, it was comforting to see the CVICU nursing staff and the physicians so under control. They’re not panicked. They’re just working. So seeing them take care of him took away those initial gut feelings of ‘this is bad.’ Seeing how confident they were in treating him was a huge relief.”

Ashleigh is an employee at Cook Children’s. As a physician liaison, she spends her days informing doctors and health care providers throughout Texas about the specialties, treatment programs and physicians at Cook Children’s. Even before Graham's birth, she had promoted the fetal echo program at Cook Children's.

But now she speaks from first-hand knowledge the kind of care a patient can receive where she works.

“I can talk about the program and I’m able to explain it to people in a completely different way now,” Ashleigh said. “It has made me a better employee. I approach my job with a compassion that I don’t think I could have had until I was a patient family member.”

Graham made such rapid progress, however, that Ashleigh and David were not patients for long. Graham was at Cook Children’s just under three weeks before he was able to go home.

Two years after his surgery, Graham sees Scott Pilgrim, M.D., at Alliance Urgent Care and Pediatric Specialties every 6 months, which is near the Wilford’s home.

Graham is doing fantastic. We were recently told we could space our appointments out to every six months! And because of all the education we’ve received, David and I know what to look for and whether or not to call if we are concerned before then."

While their boy is still so young, Graham has already made his parents incredibly proud. His strength pushes them every day, amazing even them.

“I was told there is something about these kids that spend time in the NICU, they’re just fighters,” Ashleigh said. “It’s true. You can’t really explain it, but we can already see it.”

Written by Elizabeth Sparks

After all, not even two heart surgeries can slow down the Kansas State, and Arlington Martin grad, sprinter down.

Albus, 20 years old and a sophomore, underwent his first surgery at Cook Children’s when he was only 3 days old for a serious heart defect called transposition of the great arteries. This rare condition (one in every 2,000 U.S. babies) is present at birth and occurs when the two main arteries in the heart are reversed.

A scar remains on Albus’ chest from the surgery and he knew that it was “a scary deal for my parents,” but it never prevented him from “doing what normal kids do.” He competed in football, soccer, track and wrestling.

He excelled as an athlete, but things became scary for him during the summer between his sophomore and junior year of high school.

Every time he worked out hard in football preseason, Albus felt like he was going to pass out and he became extremely light headed. Initially, he believed he was becoming dehydrated when he exerted himself. He began drinking gallons of water.

“I thought at first everyone felt this way,” Albus said. “But it kept happening. I just started pounding water. I thought everything was going to be OK, but it didn’t get any better. I felt a pain in my chest and thought I should get this checked out. I was a little scared. I didn’t know what was going on. I believed that God had a plan though and that everything would be good once it was all over.”

After feeling a pain in his chest, Albus returned to Cook Children’s to visit his cardiologist, Richard Readinger, M.D. Dr. Readinger found that the surgery Albus needed as an infant required the arteries to be detached and then reattached. A kink was caused by one of the arteries. Dr. Readinger compares the condition to what happens to a garden hose when it gets knotted up.

Vincent Tam, M.D., medical director of heart surgery at Cook Children’s, performed Albus’ second surgery to repair his coronary artery distortion heading into the 2013 football season. Dr. Tam went through the same scar from Albus’ first surgery as a baby.

Albus needed time for his chest plate to heal in his sternum. No one thought he would return to football. Except Albus. He passed the stress test and made it in time for the end of the season.

He continued to play sports the following season and excelled enough to earn a spot on the Kansas State track and field team as a sprinter.

“I just knew God didn’t stop me from playing or competing in sports,” Albus said. “He must want to me to pursue everything the best I possibly can. Everything has turned out for the best. I just want to do the best I can be and continue to work to get better.”

Don’t try to slow Nick Albus down.

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.”

Liam lived from March 25 to Nov. 1, 2013, and spent much of his brief life at Cook Children’s with critical issues ranging from an operation to repair his intestines, to heart problems, to feeding concerns.

He seemed to be constantly fighting until it was too much for his little body to overcome.

Now a little over a year later, Vickie Phathaphone, Liam’s mother, looks back on her time at Cook Children’s with an emotion that may be surprising to some – gratitude.

Recently, Phathaphone reached out to Cook Children’s Facebook page. She wanted to thank the staff who treated her little boy.

“My family and I, including Liam, loved the medical staff at Cook Children’s and you guys gave us the most amazing experience and educated us well,” Phathaphone said. “The staff at Cook Children’s helped my family and me by teaching us how to not be afraid to hold our little Liam.”

Phathaphone said doctors and nurses updated her family every day and Cook Children’s updated her by cellphone as needed. She said the NICU nurses taught her so much, ranging from the importance of breast milk and how to pump it, to how to carefully bathe, feed and hold her fragile baby.

“Although being a parent is natural, with Liam’s condition it was quite frightening,” Phathaphone said. “We did not want to hurt him, but we were reassured by the nurses what not to do and what to do. I loved how the staff treated Liam, as he was a part of their family, and I am thankful that Liam was under such amazing care.”

After letting a group of the physicians know about the letter, they were appreciative of Phathaphone’s kind gesture and began to reflect on the loss of not only Liam, but other children who have died too soon.

Surgeons Vincent Tam, M.D., James Miller, M.D., and Lisa Roten, M.D., a cardiologist, share with us what their life is like after the loss of a child.

Dr.Tam

He tries to stay in control as he fights back the tears.

But on this day, as hard as he tries, Vincent Tam, M.D., a pediatric heart surgeon at Cook Children’s, struggles to keep his composure. He’s thinking about Liam.

Dr. Tam performed two heart operations on Liam. All the procedures were successful, but other underlying problems were simply too much for the baby, who was born premature, to overcome.

In practice for 23 years, Dr. Tam copes with the death of a patient by compartmentalizing the loss. He tries his best not to dwell on it, so it won’t impact his performance in the operating room or his role as husband and father. Then, every once in a while, he receives a note or hears from a parent whose child has died, like the one from Phathaphone. The parents don’t want to express grief or even anger, but simply to say thanks.

“It’s hard because if somebody dies or somebody has a bad complication, I think, ‘Oh gosh, could I have done something differently?” Dr. Tam trails off and after a long pause continues to speak. “There’s all kinds of questions that you can ask as a Monday morning quarterback, but personally I’ve dealt with it in a way that I feel like I’ve … um …”

Again, a long pause as he composes himself. “I do the best I can with every surgery and that’s all I can do.”

Dr. Miller

Shortly after Liam’s birth, James P. Miller, M.D., a pediatric surgeon at Cook Children’s, operated on him to repair gastroschisis, a condition where the baby is born with the intestines on the outside of the body.

Even after 17,000 surgeries and 27 years as a surgeon, it only takes a quick glance at a child’s chart for the memories to come flooding back. He remembers Liam and his mom. He says he knew from being around her for a short period of time and the love and compassion she always showed to her child, Phathaphone would be a great mom.

Dr. Miller has gotten to know some patient families well over the years. Throughout his career, he’s been to many of their weddings, but he’s also seen death.

“It can devastate you for weeks,” Dr. Miller said. “It can be like reopening a wound when you realize it’s the first anniversary of a child’s death. You hope you have somebody in the hospital that you have helped or made a difference in their lives, just to get out of your rut. I don’t think people realize how much doctors do feel. When you do what we do with these kids, you do get attached to them.”

Dr. Roten

For the patient families who are cared for by Lisa Roten, M.D., a cardiologist who specializes in fetal echocardiography at Cook Children’s, they see someone who cares deeply for her patient families. But they also may be surprised to know that she understands Dr. Tam’s need for compartmentalization.

“The truth is, you have to do that,” she said. “You wouldn’t be a physician if you couldn’t do that. We have a work life and we have a personal life. I can’t carry that home with me. I do talk about the loss of my kids, but with the people who can empathize with me. I talk to my colleagues and staff, the other doctors and nurses, who cared for the child.”

Still, Dr. Roten admits to developing a special bond with most of her families and says a gesture like the one from Phathaphone and other parents means a lot to her. As much as the families sometimes need closure by writing a note or speaking to the doctors, Dr. Roten also needs to find a way to say thank you to the parents for entrusting their child’s care to her and goodbye to the children.

Dr. Roten makes every effort to reach out to families who have had a child pass and to go to the funerals whenever possible. It allows her to complete the circle of care.

“At the end of the day, we’re all humans. We are people who have families and we are touched by these families we see,” Dr. Roten said. “Even after the child dies, they never really leave our lives. There are ways that we continue on together. We take our cues from the family. If they ever want to reach out or touch base with us, that’s comforting to us. It is the end of a relationship that sometimes you’ve had for years and years with families and sometimes like in Liam’s case, it’s been shorter.

“But they are all so special to us.”