Stories of Getting Better at Children's Hospital Colorado
"A Life Saved"
by Peter, father of 18 year-old Alexa
Alexa was born on the morning of August 10, 1992—about 3 weeks early. A beautiful little baby girl, 6 lbs, 6 oz. But as the day went on, it became clear that something was not right. Alexa was listless and a little bit bluish or dusky in color. She didn’t cry much, and she wouldn’t eat. When our doctor told us something was very, very wrong, our hearts skipped a beat.
Alexa, now 18, pictured here with her father Peter,
was diagnosed with persistent pulmonary
hypertension at birth.
The doctors began a battery of tests to diagnose the problem, but as night turned to day, Alexa worsened. They had something called a pulse oximeter, a little thing they put on her finger to get an oxygen reading. Well, her reading was falling dangerously low. Eventually it was about 50%—extremely dangerous.
Alexa was on several different ventilators and had every tube known to man connected to her. At about 4:00 p.m. on the evening of the 11th, the doctor came to us and told us our baby would likely die. It was devastating. It doesn’t matter if you have a child for a day or 10 years. It’s just devastating.
At this point, they knew she had persistent pulmonary hypertension, a condition where her lungs were unable to function. There was nothing else they could do for her. No treatment. No procedures. No medicines. No hope. They told us they were transferring our baby to Children's Hospital Colorado. And maybe, if she survived the trip to Children’s, the doctors there would be able to keep her alive.
They gave us two Polaroid pictures and prepared us for the worst. They didn’t expect her to survive the transfer. Miraculously, she did. And once we arrived at Children's Hospital Colorado, everything changed.
At Children's Hospital Colorado, they launched a complete interdisciplinary medical team who began working together to save her life. They tried various ventilators, one that pushed oxygen in and out of her lungs as many as 600 times per minute, pumping her full of oxygen.
This went on into the night, and while basically nothing worked, there was hope again. Her pulse/ox would go up a little, but then it came back down. And then up a little, and then back down. My wife and I were spiraling into despair, until a wonderful thing happened.
The doctor managing Alexa’s treatment came to us and said, “You have two options. A heart lung bypass, which on a one-day-old baby has a very poor prognosis. Or, we have an experimental program going on and I can call the doctors working on it to come speak with you.” It was then that Dr. John Kinsella and Dr. Steven Abman came into our lives .
Finding hope in experimental treatment
Drs. Abman and Kinsella were introducing nitric oxide into the bloodstream using a special ventilator. In the simplest terms, this, at that time, experimental treatment irritates the lungs, which causes blood to rush to the area, which in theory would allow her lungs to function normally.
Alexa would be the 13th baby to undergo this treatment, which in the past had had varying degrees of success. Despite the uncertainties, we decided to go ahead. Faced with no other options, we fought for our child’s life with an experimental procedure.
Within 15 minutes of starting treatment, Alexa’s pulse/ox reading was up to 98%. And she never turned back. More than 10 years of careful research had paid off—it was a complete success. And an amazing story. For in our case, once it’s fixed, it’s fixed. And she’s all better.
The treatment Alexa received is now the standard treatment, worldwide, for persistent pulmonary hypertension in term babies. And now, thanks in part to our participation, these babies don’t die from this condition anymore. Alexa is today a very athletic 18-year-old high school student. She’s an excellent soccer player, an accomplished skier, a dedicated student.
In addition to saving the life of our daughter, Children's Hospital Colorado proved to me that not all hospitals are the same. At Children’s they’re at the cutting edge of research and raising the bar for clinical care. They’re continually working for better, less invasive, more modern treatments and cures.
When one hospital told us she would die, Children's Hospital Colorado saved her life with a simple procedure. As a parent, you have to ask yourself, “Do you want your child fixed by the guy who wrote the book, or the guy who read it?” We are extremely fortunate to have one of the world’s best hospitals for kids right here in Denver. Our daughter’s life depended on it.
A life changed
The Culshaw family’s experience at Children's Hospital Colorado changed their lives, in more ways than one. In addition to saving their daughter, their visit was the beginning of an important focus in their lives: raising awareness of and money for research at Children's Hospital Colorado. Peter has worked tirelessly to help establish the fundraising arm of The Research Institute, which now awards more than $734,297 this year alone to critical projects.
“Peter is incredibly adept at fundraising, in part because his efforts come straight from his heart. He is raising money for what he passionately believes in and that passion comes through,” said Steve Winesett, President and CEO of Children's Hospital Colorado Foundation.
In fact, Peter Culshaw’s interest and support of medical research played a significant role in launching Children's Hospital Colorado Pediatric Heart and Lung Center, which in turn led to the development of clinical care programs such as the Pulmonary Hypertension Program and Ventilator Care Program—critical programs in the lives of many kids.
Peter serves on numerous boards and committees within Children's Hospital Colorado, remains passionate in his support of research both in the lab and in the hospital, and continues to make an undeniable and important contribution to the health of children everywhere. We are incredibly indebted to his efforts.
Celebrating a century of medical miracles
Children's Hospital Colorado and its partners are responsible for many prominent medical discoveries and virtually all of the pediatric medical breakthroughs in the Rocky Mountain area. From finding a faster and better way to treat croup, to pioneering lifesaving treatments, we’re at the forefront of progress.
So, when you trust your child’s care to Children's Hospital Colorado, you’ll find options other hospitals won’t have for years—and may not even be aware of. For the big things, the little things, and everything in between, there truly is a difference in medical care, and a difference in hospitals. For over a century, we’ve been leading the way, with the absolute best care for kids.
Read more about Children's Hospital Colorado history.