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Patient Stories

Amazing people with inspiring stories are something we see every day at Nationwide Children’s Hospital. Meet these courageous patients and families below. 

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Meet Autymn

Bronchopulmonary Dysplasia (BPD)

Autymn’s parents have always called her a ‘miracle baby.’ Delivered at a Kentucky hospital just a few days after Christmas, 26-week old Autymn weighed only 1.6 pounds at birth. She was immediately put on specialized equipment in the NICU to help her underdeveloped lungs breathe. For a few months, there were encouraging signs that Autymn might be able to go home on a ventilator. But these hopes quickly faded as she struggled to breathe. Doctors told the Tacketts that Autymn had bronchopulmonary dysplasia (BPD) and pulmonary hypertension, both life-threatening conditions.
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Desperate for answers, Jennifer and husband Erick learned that Autymn’s physicians had been consulting with experts at Nationwide Children’s Hospital. When their doctor told them that Nationwide Children’s had one of the few Comprehensive Treatment and Research Centers for Bronchopulmonary Dysplasia in the country, the couple knew they had to go.
 
Autymn and her mother were airlifted to Nationwide Children’s, while Erick made the six-hour trip by car.  When they landed, Jennifer says she was in awe of the bustling energy of the BPD team as they went to work stabilizing Autymn and making subtle changes to her ventilator settings.
 
At one point, Jennifer was shocked to see that her little girl wasn’t breathing. The nurse quickly calmed her, saying it was because Autymn finally wasn’t working so hard to catch her breath. Stunned, Jennifer called her husband, who was still on his way to the BPD unit. 
 
“I told him that it was a miracle. She was a different baby.  She was already improving and we hadn’t even been there for two hours.”
 
And the improvements kept coming. Doctors discovered that Autymn’s pulmonary hypertension was from her strained efforts to breathe. With her breathing stabilized, Autymn no longer needed heart medication.  With the help of speech, occupational and physical therapists, Autymn has started to reach regular developmental milestones.
 
“Before, she was working so hard to breathe, she couldn’t just be a baby and do things that babies do. The help Autymn got here has let her become a normal baby,” says Erick. 
 
With so many early setbacks, the Tacketts will only talk about going home in code; they call it “going to the zoo.” But with Autymn thriving, they feel confident that their little miracle baby will soon be right back where they want her – and just in time for her first birthday.
 
I told him that it was a miracle. She was a different baby. She was already improving and we hadn’t even been there for two hours.
 
“Every day we tell her, ‘we’ll be going to the zoo for Christmas,’” says Erick. “We’ve come so far in just a few months, I would tell parents who have a premature child to not give up hope, and to find the resources that will help their baby the most, wherever they might be.  We did, and it’s made all the difference.”
 
Even after Autymn returns home, the experts at Nationwide Children’s will continue to evaluate her progress – and learn from her experiences so that other children with BPD can get the help they need.
 
As one of the few institutions in the country that conducts pediatric translational research – the kind of research that transforms discoveries from the lab into life-saving treatments – Nationwide Children’s is able to design and deliver innovative care that ultimately helps children everywhere.
 
Researchers at Nationwide Children’s are developing ways to predict which babies are more likely to get BPD with the goal of preventing the disease and improve outcomes of premature babies like Autymn. Their groundbreaking work is also helping standardize BPD treatment protocols across the nation to help ensure that babies with BPD – no matter where they are – can receive the kind of care they need to thrive.
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Meet Angela

Congenital Heart Disease
 
Claudia Irizarry was just five months pregnant when a routine ultrasound revealed that her unborn daughter, Angela, had a life-threatening heart defect that left Angela’s heart with only one functioning chamber to pump blood.  Babies born with this serious condition usually live just a short time unless their walnut-sized hearts undergo immediate reconstruction. For Angela, that meant open heart surgery to implant a synthetic blood vessel to help her heart deliver blood more efficiently to her lungs. While the surgery was successful, it wouldn’t be Angela’s last. Because her synthetic graft wouldn’t grow with her, each year, Angela would need open heart surgery to replace the graft. With the surgeries also came the risk for infection – and rejection, a problem that could occur if Angela’s body reacted to the plastic in the synthetic graft.
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Claudia says that while it was difficult knowing that her daughter would need so many risky procedures, as Angela grew into an active toddler who loved to run and play, it was obvious that her life depended on them.
 
“She would get tired easily. If she was crying or being active, her lips would turn purple or blue from not having enough oxygen,” recalls Claudia. 
 
“So it would be another year, another surgery.”
 
 At age three, when Angela was getting ready to have her third graft surgery, clinician-researchers Christopher Breuer, MD and Toshiharu Shinoka, MD offered the Irizarrys another option – an experimental procedure to use a bioengineered blood vessel, made from Angela’s own cells, instead of the plastic graft.
 
“We went online and read about the research they had been doing, and saw that this could help Angela avoid future surgeries and potentially reduce her risk for infection,” said Claudia. “This looked like her best chance.”
 
At age three and a half, Angela became the first person in the United States to receive a tissue-engineered blood vessel, marking a historic moment for the field of regenerative medicine. The graft was created by infusing a biodegradable scaffold, shaped like a blood vessel, with Angela’s own cells. After a few weeks inside her body, the scaffold melted away, leaving behind a perfectly functioning vessel that can grow with Angela.
 
"I always told Angela that she is special because she has these problems in her heart, but now she's more special because she's helping another kid,” says Claudia. “She may not have a normal heart, but she has a big heart.
 
Angela also became the first child to enroll in a five-year study to follow her progress, opening the door for several other children with organ defects who could benefit from tissue-engineered vessels.
 
“I always told Angela that she is special because she has these problems in her heart, but now she's more special because she's helping another kid,” says Claudia. “She may not have a normal heart, but she has a big heart.”
 
Today, six-year old Angela’s ‘big heart’ is pumping strong and telling her to be a firefighter. And a doctor. When she isn’t busy pedaling around on her bike with her big brother Alexander, she’s dancing, drawing and writing. She recently took up gymnastics, and loves school. Doctors expect her – and her grafted vessel – to continue to grow and thrive.
 
Even though Angela’s family is based in Pennsylvania, they make regular check-up trips to Nationwide Children’s to see Dr. Breuer and Dr. Shinoka and their team. For the Irizarrys, the trip is a labor of love – not just for Angela – but for the physicians and researchers they feel changed their daughter’s life.
 
“We love the hospital. From the doctors, to the nurses, to the people in the cafeteria. They are angels and they are friends,” says Claudia. “They helped our child and they want to help everyone’s child – not just in Ohio, but kids all over the world. I feel so lucky to have them in our life.”
 
Led by Dr. Breuer and Dr. Shinoka, Nationwide Children’s Tissue Engineering Program, is developing some of the nation’s most innovative technologies in regenerative medicine today. The expertise that created a functioning blood vessel for Angela’s heart is bringing that same advanced knowledge to children with other organ defects that can be treated or potentially cured using tissue-engineered implants.
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Meet Kaylee and Tess

Life-changing reconstructive surgery

Kaylee and Tess both love the color purple and chocolate cupcakes. Right now, they are both recovering from life-changing reconstructive surgery at Nationwide Children's. But there is one major difference between them. Kaylee traveled 2,300 miles to get to Nationwide Children's from her home in Nevada while Tess traveled 11 miles from her home in Gahanna. But both their families turned here for hope and the specialized treatments the girls need now and in the years ahead.  

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Six-year-old Tess was born with a rare abdominal condition called cloacal exstrophy that affected the development of her urinary, genital and digestive systems. In this condition, these three systems are fused together, and are also exposed to the outside of the body because the lower abdominal wall does not develop properly. Tess was born at a hospital in Columbus, OH and taken directly to Nationwide Children's, where she stayed for the first five weeks of her life. During that time she had her first major surgery, to partially close her abdomen and return her organs to the inside. Ten months later, Tess had major surgery again, this time to close her abdomen and reconstruct her bladder.  A final major surgery successfully completed her bladder reconstruction.  All of these complex reconstructions required the expertise and collaboration of several surgical specialties, including urologypediatric surgeryplastic surgery and orthopedic surgery.
 
Through it all, Tess says she loves staying at Nationwide Children's because she gets to watch a lot more TV than she does at home, and there's so many options!
 
Four-year-old Kaylee, traveled to Nationwide Children’s from her home in Nevada for similar reasons.  She was also born with a very complex condition called cloaca and has had six surgeries during her short lifetime. A cloaca is a malformation in females where the gastrointestinaI, reproductive and urinary track exits are all  fused together, creating a single common channel. In normal anatomy, these openings are separate.
 
Kaylee's original surgeries to separate these tracks were not successful so Kaylee’s mom began looking for an expert second opinion, which led her to Marc A. Levitt, MD, surgical director for the Center for Colorectal and Pelvic Reconstruction at Nationwide Children's. Dr. Levitt consulted with V. Rama Jayanthi, MD, chief of urology at Nationwide Children's and together they repeated Kaylee's surgery, this time with excellent results. She can now do all the things typical four-year-olds do and there are no plans for additional surgery in the future.
 
Kristie Cassel Thompson, Kaylee's mom, wants to bring attention to her condition and assist other families seeking help. "We're all bound by the limited treatment options that are available and incredibly grateful for the help of Nationwide Children's."
 
Kaylee will need lifelong urological, gynecological and colorectal care. And because the Center for Colorectal and Pelvic Reconstruction is the first center in the world that formally integrates all these specialties, Kaylee will continue to have the expert care she needs.
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Meet Blake

Cancer –  Neuroblastoma

The most horrible words Jen and Eric ever heard were, “I’m sorry, your son has cancer,” and the most beautiful sound they ever heard was the ringing of the “Victory Bell.” The time between the two was a one-year journey filled with challenges and hope. 

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Blake was 10 months old when he was diagnosed with neuroblastoma. Because his cancer had spread throughout his body, it was initially unsafe for him to have surgery to remove the tumor. Yet, if the tumor was not removed, Blake’s airway could stop functioning. In fact, it was something of a miracle that he was able to breathe given the fact that the tumor had pushed his airway out of place. 
 
The challenges Blake faced when he was diagnosed with cancer could have seemed insurmountable, but Blake, his family, and his team of doctors and nurses at Nationwide Children's Hospital were up for the fight. Blake’s chemotherapy treatments began immediately.
 
And then a new challenge arose for Blake’s little lungs. He developed pneumonia and needed specialized treatment. Because protocol required a six-week delay for his tumor removal, a decision was made to use the time to give Blake another round of chemotherapy in an effort to shrink the tumor. 
 
Once again, hope would emerge during the hardest of times. The last round of chemotherapy shrunk the tumor to half of its original size. At last, the long awaited day arrived when Blake was cleared for surgery. 
 
While the months leading up to Blake’s surgery were long and arduous, the 9-hour procedure to remove most of his tumor must have seemed just as long to Blake’s family. The surgery was complicated, but doctors Denis R. King and Charles A. Elmaraghy teamed up to ensure its success.

After the surgery, Blake’s family was relieved to have that big day behind them; but Blake still had another big challenge to face. Because his vocal cord was paralyzed, there was only a 5% chance he would be able to eat, breath and talk normally. Once again, hope would prevail and Blake has not had difficulty with any of these things. 
 
Today, when you see the beautiful smile on 6-year-old Blake’s face, it is hard to imagine the journey he has been on. He was only a baby when he was diagnosed with a complicated, life-limiting cancer. At the age of two, after months of treatment, surgery and recovery, Blake participated in a very important tradition at Nationwide Children's Hospital. He rang the “Victory Bell” to commemorate his triumph over cancer.  
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Nationwide Children's Hospital
700 Children's Drive Columbus, Ohio 43205 614.722.2000