Congenital Diaphragmatic Hernia: Cristian's Story
Patient Story Highlights
- Baby Cristian enters the world with Congenital Diaphragmatic Hernia, but defies the odds with the help of his treatment team at John Hopkins All Children's Hospital.
- After discovering the Center for Congenital Diaphragmatic Hernia, the first impatient center in the country, Cristian and his family received specialized care from a team of experts.
- Through challenges and setbacks, Cristian fought hard and is making great strides today.
First birthdays are special.
They’re a milestone that marks a foundational year of growth, of learning, of new shared experiences for baby and parents.
But for some babies, first birthdays aren’t simply special … they are a triumph.
Baby Cristian is a triumph.
Imagine being an expectant mother, over the moon with joy and anticipation.
But after a screening scan 20 weeks into the pregnancy, there is unfathomable news.
Your unborn child has congenital diaphragmatic hernia, a life-threatening birth defect in which the diaphragm doesn’t form completely, leaving a hole that allows organs to push up into the chest, crowding the heart and choking off lung growth.
But there’s more.
Imagine getting the news that your child also has a large ventricular septal defect (VSD) — a hole in his heart — as well as radial dysplasia, a missing bone in his forearm, a missing finger, scoliosis and more.
Imagine getting the news that your child has less than a 50 percent chance of survival.
Now imagine deciding this prediction is wholly unacceptable and doing everything in your power to change your baby’s odds.
Into the World
Baby Cristian entered the world a very sick little boy.
Babies who have CDH often do not have smooth births because of the severity of their condition, and Cristian, with his host of additional medical challenges, was no exception.
A struggle to breathe.
A struggle to insert a breathing tube.
He was quickly whisked away to where he could be stabilized and receive expert care.
Even in the face of their fear, Cristian’s mom, Taylor, and dad, Damion, knew their baby was exactly where he was meant to be. Soon after the diagnosis, they began to research hospitals that treat CDH babies. They connected with support groups online and talked to other families. Many encouraged them to learn about the Center for Congenital Diaphragmatic Hernia at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida.
The first inpatient center in the country dedicated solely to the treatment of CDH, this unique team of experts led by medical director David Kays, M.D., includes experienced surgeons, neonatologists, cardiologists, nutritionists and other specialists — all focused on achieving the best possible outcomes for these children.
In a consultation with the family, Kays offered comfort, confidence — and much higher odds for their baby’s survival.
“We believe part of our reason for existence is to take care of those kids that nobody else can take care of,” Kays says. “To prove that children whom others believe can’t survive actually can survive.”
Taylor had made her decision.
“I knew we had to find a way to get to Johns Hopkins All Children’s,” Taylor says.
The family relocated from New York to St. Petersburg, and now baby Cristian had entered the world.
But how could this little one possibly overcome the challenges ahead?
Within a few hours of birth, it was clear that Cristian needed the highest level of life support. He was placed on a type of heart-lung bypass called extracorporeal membrane oxygenation (ECMO).
Kays performed the lifesaving CDH repair at 17 hours old, moving Cristian’s stomach, intestines, spleen and a small portion of the liver down to their rightful place in his abdomen and successfully closing the hole in his diaphragm. Cristian came through the surgery beautifully.
But in the ensuing days it became apparent that this baby had critical airway obstruction issues — primarily, tracheal stenosis, a rigid narrowing of his airway. It was preventing Cristian from being able to come off ECMO support.
Fortunately, one of the most highly regarded airway surgeons in the country, Jason Smithers, M.D., is among the core team members with the CDH program at All Children’s.
When Cristian was just over a month old, Smithers performed a tracheal resection — carefully removing the stenotic portion of the trachea and then putting Cristian’s windpipe back together.
Just before Christmas — a glorious gift for the family — Cristian was able to come off ECMO support.
Taylor was more hopeful than ever, as she watched her tiny son begin to grow and get stronger.
She’ll never forget the first day that she was finally able to hold him in her arms.
“I was in complete shock and totally in love,” Taylor says. “The feelings that ran through my body … it was the best feeling in the world.”
As the weeks ticked by, Cristian would have so much more to overcome.
He would undergo multiple surgeries, including a procedure to repair the hole in his heart, performed by interventional cardiologist James Thompson, M.D., another important member of Cristian’s care team.
He needed time for his very small and fragile lungs to develop and get stronger. He needed to be able to receive nutrition adequately and continue to gain weight.
And this young mother needed to believe that her baby could thrive.
A caring staff doted on her boy, answered her questions, and calmed her fears.
“It’s like we were a little family on the CDH unit,” Taylor says. “I had never heard of such a thing.”
Just when all indications were that Cristian was getting well enough to go home — a new heartbreak. Cristian began showing signs of tracheomalacia, or dynamic airway collapse.
Smithers performed a posterior tracheopexy, a surgery only a few children’s hospitals in the country provide. With this procedure, Smithers was able to suture the “floppy” portion of the trachea to the front of the spine to secure an open airway so that Cristian could continue to get air into his lungs.
It took some time for Cristian to recover, but finally, after more than eight months in the hospital, this little fighter was ready to go home, thrilling the doctors and staff who’d cared for him through so many ups and downs.
“Cristian happened to be born with a series of anomalies that — most any one of them by themselves could have been life-threatening,” Smithers says. “I believe having an expert, cohesive team that could understand and tackle the various issues made all the difference for him.”
On July 25, Cristian’s family walked out of the hospital with their beautiful baby boy. It was time to take their son home. Taylor’s joy was summed up in a Facebook note to the CDH team:
Thank you. Thank you isn’t enough in words but it’s the only thing we can think of to say. Thank you for saving our son and giving him the fighting chance he deserved. Thank you for doing everything in your power to help him get better, for loving him like he was your family.
Today, Cristian is making great strides.
He’s beginning new therapies to help with speech, feeding and movement.
He’s had many new teeth come in.
He is loving life — a giggly, happy baby, inspiring everyone around him, especially his mom and dad.
“He is so amazing, so strong, so beautiful,” Taylor says.
“He’s beyond perfect.”
Happy birthday, Cristian.
And many, many more.
Johns Hopkins All Children’s Center for Congenital Diaphragmatic Hernia
At the Johns Hopkins All Children’s Center for Congenital Diaphragmatic Hernia (CDH) in St. Petersburg, Florida, families find hope during a time that may otherwise feel hopeless. Led by CDH expert David Kays, M.D., our team combines compassionate care, innovative techniques, and cutting-edge technology and equipment to treat babies with CDH.