Family Returns Home to Chicago After 4 Months in Intensive Care Following Infant’s Life-saving Heart Surgery and Liver Transplant

For Release: October 31, 2016

STANFORD, Calif. — Donning a Stanford onesie appropriately labeled with the words “Tough Guy,” 11-month-old Owen Fochler is finally returning home to Chicago after spending 4 months at Lucile Packard Children's Hospital Stanford, where he underwent successful surgery to repair two rare birth defects impacting both his heart and liver.

This past May, the Fochler family traveled from their home in Palatine, Illinois, 30 miles outside of Chicago, to Packard Children’s Hospital in Palo Alto, California, so their son’s heart could be repaired in a unique 12-hour operation known as unifocalization, which was pioneered by pediatric cardiothoracic surgeon Frank Hanley, MD, chief of pediatric cardiac surgery at Packard Children’s Hospital and Stanford University School of Medicine. In addition to the surgery for his life-threatening heart defects, Owen also needed a liver transplant, which he was able to receive after his heart repairs thanks to a very special donor — his mom — and a large transplant surgical care team led by Carlos Esquivel, MD, PhD, chief of pediatric abdominal transplantation at Packard Children’s and Stanford University School of Medicine.

When Owen was born in November 2015, he appeared to be a healthy, happy baby. Doctors noticed what they believed to be a slight heart murmur and advised parents Devin and Kyle Fochler to bring him back in a month to see if it had progressed. In the meantime, they were sent home to begin their lives with baby Owen. But Owen’s mom had an unsettling feeling and booked an appointment with a pediatrician.

Five days later, at Ann and Robert H. Lurie Children’s Hospital of Chicago, Owen was diagnosed with a rare heart defect called tetralogy of Fallot (ToF), with pulmonary atresia (a missing heart valve between the pumping chamber of the heart and the lungs) and major aortopulmonary collateral arteries (small arteries that develop to supply blood to the lungs to compensate when pulmonary circulation is underdeveloped). In addition, doctors identified a buildup of bilirubin (yellow pigment) in Owen’s bloodstream and diagnosed him with biliary atresia, a chronic, progressive liver condition in infants that blocks the bile ducts, quickly causing damage and scarring of the liver cells, and eventually leading to liver failure. It is not uncommon that patients with congenital heart defects also experience liver complications due to the organs’ associated function of ensuring blood circulates healthfully throughout the body.

In the coming months, even after undergoing a Kasai portoenterostomy procedure, which connects the bile drainage from the liver directly to the intestinal tract, Owen’s liver progressively worsened. It was then that the Fochler family learned of Dr. Frank Hanley, co-director of Packard Children’s Heart Center, and the unifocalization procedure that he invented and perfected to repair young hearts affected by ToF. Hanley’s remarkable 98 percent success rate with the procedure, which allows him to do in one marathon surgery what other surgeons would stage over months or years, has helped him build the largest program anywhere for this complex surgery. It’s a program that the Children’s Hospital Association has noted for having exceptional outcomes, completing more than 200 ToF surgeries in the last 6 years, many of which have treated the most complex cases in the world.

In May, the Fochler family relocated to Palo Alto, and in early June, Owen’s heart was successfully repaired in a 12-hour surgery performed by Hanley and his team at Lucile Packard Children's Hospital. Following the surgery, doctors continued to monitor Owen’s liver condition, knowing that despite having his heart on the mend, a liver transplant would eventually still be necessary to save his life.

With his newly repaired heart, Owen quickly grew bigger and stronger, which made moving on to his liver transplant a viable option. With wait times on the transplant donor list often lasting for months, Dr. Carlos Esquivel suggested another possibility: a living-donor transplant, in which a family member or other matching candidate would donate a portion of their liver. Owen’s mother, Devin, was tested and learned she was a match. In September she donated part of her liver to once again give new life to her son. “I didn’t think twice about it,” Devin said. “I think anyone who has a child and is faced with this option would jump at the chance to donate. I’m so grateful I was a match and able to do it.”

The experienced liver transplant team at Packard Children’s, which Esquivel has led since 1995, is now one of the world’s largest programs. According to the Scientific Registry of Transplant Recipients, the team has performed more pediatric liver transplants than any other institution in the western United States. In fact, the team has performed more than 700 liver transplants, including some in which patients also received another organ, such as a heart, kidney, lung or intestines, and it has the nation’s best 3-year liver graft and patient survival rates.

“To help treat Owen’s extreme case, we put together a remarkable team of subspecialists in cardiovascular and transplant surgery,” said Esquivel, the Arnold and Barbara Silverman Professor of Pediatric Transplantation at Stanford’s School of Medicine.

“Our collaboration between multidisciplinary teams including cardiovascular surgery and transplant surgery is critical for achieving optimal outcomes in such highly complex cases like Owen’s,” added Hanley, the Lawrence Crowley, MD, Endowed Professor of Child Health at Stanford’s School of Medicine.

Now, the Fochler family is preparing to return home to Chicago. Owen will be transported on a medical flight so he can remain on a ventilator, and he will be taken immediately to Lurie Children's, where he will continue to recover in the ICU over the coming weeks.

“Owen has had a rocky road,” said Devin. “But he is in such a good place now that it’s time to go home. Time to let him be a normal baby.”

He will celebrate his first birthday on Thanksgiving of this year, and the family is hoping to be back home to enjoy it together. “Despite many ups and downs, we certainly have a lot to be thankful for this year,” Devin said. As Drs. Hanley and Esquivel gathered in Owen’s room in the CVICU to bid farewell to the Fochler family, she added, “I never thought we’d get to this point. Truly.”

Authors

Kate DeTrempe
(650) 721-8527
kdetrempe@stanfordchildrens.org

Samantha Dorman
(650) 384-5826
sdorman@stanfordchildrens.org