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Amazing Kids, Amazing Stories: Finn's Story

Pediatric Heart Care

Amazing Kids, Amazing Stories: Finn's Story

A Miracle of Modern Medicine

Finn Gosheff, now approaching his second birthday, looks awfully cute in those big glasses. His mother, Rebecca, thinks so, too.

"He is so funny," Rebecca said. "He does this thing where he takes his glasses off, cleans them with his breath and then intentionally puts them back on his face all crooked. Then he gives me this look that just cracks me up."

Amazing Kids, Amazing Stories: Finn
For more pictures of Finn, see the slideshow at the bottom of this page

At moments like this, Finn may not quite be ready to say the words, but they might as well be etched on that delicious grin of his: I'm crushin' it!

He truly is full of joy, loving life and has come far from those early days when he danced on the edge of survival time after time. For his mother and father, faith may have passed its ultimate test. Their son is truly a miracle boy - a child who illustrates why American Family Children's Hospital is one amazing place where hope is always overflowing.

Rebecca, a former UW Health respiratory therapist, and her husband Chris, were eagerly awaiting their first baby, due in August 2013.

During Rebecca's 12th week of pregnancy, doctors noticed a potential kidney problem on an ultrasound - the first of many medical challenges her baby would encounter.

By the 20-week ultrasound, the anxiety level increased substantially with these three findings:

  • A portion of the baby's right kidney was enlarged.
  • The baby had a ureterocele, or swelling in the ureter that prevents urine from moving freely to the bladder.
  • The baby had a very serious, but treatable, heart defect known as truncus arteriosus.

"Rebecca's baby had only one large vessel coming out of the top of its heart, instead of the normal two - a pulmonary artery and an aorta," says pediatric cardiologist Amy Peterson, MD, who performed the fetal echocardiography confirming the heart defect. Within days after birth, open heart surgery would be needed to separate the pulmonary artery from the aorta and to close a hole in the heart.

Nineteen more weeks would take their sweet time before Finn would enter the world.

"The rest of my pregnancy was not easy, although thanks to the detection that was done, we had time to prepare for the challenges we knew were coming," Rebecca said.

"Unfortunately," she said, "there were so many challenges ahead that we never saw coming."

More Complications

Finn's heart rate began dropping even before he was born by emergency Caesarean section on August 9, 2013, at Meriter Hospital in Madison. Rebecca saw her newborn son for just a glimpse before the CHETA emergency transport ambulance rushed her baby to UW Health's American Family Children's Hospital.

"Finn was born on a Friday, but I could not leave Meriter with him, having just given birth," Rebecca said. "By the time I arrived at American Family Children's Hospital on Sunday, Finn was already in surgery."

Two surgeons operated on Finn together to address his kidney and ureter, and to build him a new anal opening through which solid waste could pass because he was not born with one.

A few more days came and went. Soon, however, the tension would escalate even further.

By his fourth day, Finn was turning blue. Surgery to repair Finn's heart - which is very complicated, but usually successful - was being planned for later that week. Still, something else was making everyone even more anxious, as Finn's vital signs were going in the wrong direction.

"We knew about Finn's heart defect," said pediatric critical care specialist Melissa Cercone, MD. "But clearly something else was in play."

Physicians from several pediatric specialties discussed the next step. On Day Six, a bronchoscopy and CT scan pinpointed the problem - Finn's airway, or trachea, had a long segment that was about 75 percent narrower than normal, severely compromising his ability to breathe.

A very rare birth defect known as "complete tracheal rings" - so-called because they are "O"-shaped instead of the normal (and wider) "C"-shaped - put Finn's life in even greater jeopardy.

"We were in a conference with the doctors," Rebecca said. "Once the narrow trachea was confirmed, they told us that Finn's chance of survival dropped from 95 percent to 55 percent."

Time was running out.

Finn's surgery would become even more complex. Now, two surgeons - one for his heart and one for his airway - would work together during a most unusual 13-hour operation in an attempt to save this little baby.

Two Pediatric Surgeons Get Ready

Heading up Finn's surgical team were Petros Anagnostopoulos, MD, ("Dr. A." for short) director of pediatric cardiothoracic heart surgery, and J. Scott McMurray, MD, a pediatric otolaryngologist. McMurray, an expert at complex airway reconstructions, trained at Cincinnati Children's Hospital, one of the leading pediatric airway reconstruction centers in the world.

"We were so lucky to have so many experts right here in Madison," Rebecca said. "Thank goodness we didn't have to take him to another city."

As the hours went by, the Gosheffs eagerly waited for updates from the surgical team. They were grateful to hear that Finn's heart repair went smoothly.

A complication, if there was going to be one, was likely to arise from the trachea repair, known as a slide tracheoplasty - a highly advanced procedure that can challenge even the most accomplished pediatric otolaryngologist. Performing this repair on a one-week-old infant - in combination with a major heart reconstruction - only elevated the risk.

 Finn's airway before surgery Finn's airway after surgery 
Left: Finn's airway barely measured 2 millimeters wide before surgery. Right: After surgery, his airway measured 6 millimeters wide, which is normal for a baby his age.

"We divided the narrowed section of trachea in two and then split the trachea up the front on one end and the back on the other," said Dr. McMurray. "We could then slide the two ends of the trachea over each other and sew them together. This made Finn's trachea shorter, but much wider, allowing him to breathe and grow," he added. "This is extremely delicate work, and something for which you train your entire life."

As Finn lay on the operating room table, a nurse from the surgical team visited Rebecca and Chris in the waiting area.

"We've hit a bit of bump," the nurse practitioner said. "Finn's airway is swollen and bleeding. His breathing is also obstructed by mucus secretions, which are normal, but in this case, a big concern because they are acting as plugs."

As Finn's blood pressure and oxygen levels dropped, the situation grew more serious. He made it out of surgery, but things got even scarier once Finn came back that night to the pediatric intensive care unit.

"It was really touch-and-go for several hours," remembers pediatric critical care specialist Peter Ferrazzano, MD, one of several physicians responsible for suctioning the mucus plugs that were clogging his airway.

"Putting a camera down this fragile airway and suctioning mucus plugs right after such a complex surgery can be very risky for the baby," Dr. Ferrazzano said. "There was no other choice, however, to keep his airway open and his blood oxygenation level up."

The medical team, including multiple physicians, nurses and respiratory therapists, worked throughout the night - navigating three episodes of respiratory failure - to keep Finn alive.

At one point, Rebecca remembers a nurse practitioner pulling her and Chris into a consultation room

Mom Gave Finn a Pep Talk

"I think they were kind of telling us that you might want to be ready to say goodbye, just in case," Rebecca said. "I simply could not do that. Instead, I went back into his room and gave him a little pep talk. It was the biggest test of faith in my life."

Around 4am, just before leaving to pump some breast milk, Rebecca peeked through the doorway to Finn's room.

"It was the first time he started to look like he was coming back. Ultimately, he got through the night and we didn't lose him," she said.

Day by day, week after week, Finn began to recover and get stronger.

"There were plenty of ups and downs," Rebecca said. "He had more procedures. He dealt with infection, but after nearly 11 weeks in the hospital, we took Finn home for the first time."

Upon reflection, Dr. Ferrazzano says that Finn would never have survived without the incredible teamwork that takes place every day at American Family Children's Hospital.

"Everyone needed to be doing everything the right way," he said. "Finn's successful outcome depended on it."

"The team is only as strong as its weakest link," Dr. A added, "and we had no weak links. Finn beautifully illustrates what it means to give high-end care in a supportive environment."

Finn still has plenty of medical challenges that keep his parents busy.

More than 20 UW Health pediatric specialists representing cardiology, genetics, urology, gastroenterology, neurosurgery, developmental pediatrics and others have cared for this little guy. Slowly but surely, with a surgery here and a procedure there, things get checked off the list. Another urology surgery was completed in March 2015, and two months later, Finn had a balloon angioplasty on his pulmonary arteries performed by pediatric interventional cardiologist Luke Lamers, MD.

"He graduated from the Pediatric Complex Care Program, which was a big milestone," Rebecca said. "What I really love is enjoying the more typical milestones for a boy his age, like walking, climbing, going to the zoo or the park, and, of course, making people laugh."

Asked what she sees for Finn when contemplating the future, Rebecca reflected for a moment.

"His future is really bright," she said. "Finn will excel at anything he wants to. What, after all, couldn't he do after everything he has already been through?"