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.”

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

Kenda Hooker was 3 years old when doctors discovered a hole in the top chamber of her heart. Like many congenital heart defect (CHD) patients, she went on with her life assuming her heart had been ‘fixed.’ As memories faded, her medical records were lost and her parents, who knew the most about her condition, passed away. So when she ended up with health problems nearly three decades later, doctors didn’t know where to begin.

“I started feeling dizzy and fatigued. I even passed out a few times,” said Kenda. “Several doctors told me the same thing, ‘You’re a new mom, you’re probably depressed. I even had my husband go with me to tell them that there was something wrong.”

Kenda wasn’t depressed. Instead, she was having issues with arrhythmia and would need a catheter ablation to remove the faulty electrical pathway inside her heart. That was just the first of several unfortunate diagnosis’s Kenda would hear over the coming years.

Next, it was the severe heart defect found in her first daughter, Koralyn.

“Koralyn Marie was born April 9, 2012. We knew prenatally that she had hypoplastic left heart syndrome,” said Kenda. “She spent her whole life at Cook Children’s, we were never able to take her home.”

Koralyn’s cardiologist, Lisa Roten, M.D., said her little heart was severely underdeveloped. As hard as they tried, there was little the doctors and nurses at Cook Children’s could do to save her. She passed away at 4 months old.

With the arrival of Kenda’s second daughter, Karis, in October of 2015 came more unwelcomed news. Another heart defect was diagnosed, again prenatally, but this one was less severe.

“Karis has an atrial septal defect,” said Kenda. “She had another hole in her heart but it has already closed on its own.”

Dr. Roten says there’s no way to know right now if there’s a genetic reason Kenda’s daughters both experienced heart problems. After all, she also has three heart-healthy boys.

“Kenda is part of the first generation of complex CHD patients who are truly thriving,’ said Dr. Roten. “A lot of the surgeries we perform now were not an option before the 1980’s so we’re seeing a new group of patients who have undergone surgery and are able to lead pretty normal lives.”

Dr. Roten says there are so many of these patients that a new subspecialty has even been created. At Cook Children’s, The Adult Congenital Heart Disease program treats patients who have outgrown pediatric care, including women with CHD who are considering becoming pregnant.

For Karis, her future is full of hope. Dr. Roten isn’t sure she will even need surgery. Even if she does, it likely won’t be an open heart operation like the one her mother had. Instead, her heart could be mended in the cardiac catheterization lab at Cook Children’s, with just an overnight stay. But like her mother, she will need to see a cardiologist for lifelong care.

“The fact that people with CHDs are going on to have kids shows just how far we have come,” said Dr. Roten. “At the end of the day, it may not be the life you would have chosen for yourself or your child, but it’s not a bad life. People with CHDs are going on to live good quality lives. The most important thing is to keep going.”

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

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.”