Today is Father’s Day. So it’s makes sense that we’d share a story about a father. But this isn’t just any dad. Aside from being a former employee at Children’s Memorial, Sean Benjamin is a generous man. In fact, he gave his son a the most remarkable present imaginable — a piece of himself, and ultimately, the gift of life. Happy Father’s Day to all of you father’s, and enjoy Sean’s story…
“The importance of those two hospitals being next to each other became clear. I am sure families going through living-donor transplants are happy about the new arrangement too.”
– Sean Benjamin
By Sean Benjamin
On Labor Day weekend 2008, when our son Jack was nine weeks old, we found out that he had biliary atresia.
Biliary atresia, or BA, occurs when the bile ducts inside or outside the liver do not develop normally. It is not known why the biliary system fails to develop normally. Healthy bile ducts help remove waste from the liver and carry salts that help the small intestine break down fat. So when BA occurs, bile is backed up in the liver. BA is rare and affects about one out of every 18,000 infants. It is more common in females, premature babies and children of Asian or African-American heritage. So Jack really defied the odds.
At nine weeks old, Jack was still jaundiced. We took him in for labs. On a Saturday visit to the Lincoln Park Zoo, we received a call from Jack’s pediatrician. His bilirubin levels were way off. Jack was showing signs of liver damage. At Children’s Memorial Hospital, Dr. Peter Whitington saw him and immediately diagnosed him with BA. Jack was scheduled for surgery. An operation called the Kasai procedure was done to connect the liver to the small intestine, going around the damaged bile ducts. The success rate for this procedure is around 30 percent and it is recommended to be performed before the child is eight weeks old. Jack chose to go with the 60 percenters. The procedure did not take.
Jack’s condition worsened much more quickly than the doctors anticipated. My wife, Noelle, took Jack to Children’s the week of Thanksgiving. His condition was dire. Jack was put on the organ donor list to receive a cadaveric liver. However, he had no time to waste. Noelle called me at work and told me I had to get to Northwestern Memorial Hospital immediately to be tested to see if I was able to donate a piece of my liver to Jack. A living-donor transplant was the way to go.
The drive from my job at Northwestern University in Evanston to Northwestern Memorial Hospital downtown was a blur. The testing to see if I was compatible, which would normally be done over a period of days, was rushed. The MRI suite stayed open late waiting for me to arrive for an abdominal scan. Everything seemed fine and it looked like it would be a match. Of course, I was worried about the liver not being a match (and the condition of the liver…).
Jack continued to get worse and could no longer wait. At 5 months old his liver was failing, showing signs of cirrhosis. The transplant surgery was scheduled for December 4. I was admitted to Northwestern in downtown Chicago and Jack was already an inpatient at the old Children’s Memorial in Lincoln Park.
Living in Chicago, we know that distance is short…a few miles. But that distance grows to astronomical proportions when your child is in a hospital waiting for a surgical team at another hospital to bring a fragile piece of liver up Lake Shore Drive in a cooler. Then that small piece of liver needs to be placed into a 5-month-old infant. And this was a surgery that 15 years ago they would not even have performed on a child Jack’s age.
Luckily, I was sedated and was unaware that during my surgery the doctors found out that the vessels to my liver were positioned differently than they expected. They were not sure if the liver would be a fit. An hour-long conference took place while I was sedated and open on the table. They decided to proceed.
My wife got the worst of the stress. She was awake during all of this. She was at Children’s waiting for word from Northwestern that the piece of liver was on its way and that Jack should go to surgery. A husband and a child in surgery in two different locations and a 4-year-old daughter back at home, unsure of what was going on.
I have had the pleasure of working at both hospitals so I knew we were in good hands. And I knew the connection between the two hospitals and their medical staff. Both of my children were born in Prentice Women’s Hospital at Northwestern and both have made trips to the emergency room at Children’s (Jack more so than Lily).
During the time I spent at Children’s working in Medical Imaging, there was always talk of Children’s needing more room and that eventually they would open a new hospital right next to Northwestern. At the time it just meant a longer commute and more expensive parking for me. But Jack changed that for me. The importance of those two hospitals being next to each other became clear. I am sure families going through living-donor transplants are happy about the new arrangement too.
Jack is four years old now, and three and a half years post-transplant. He is doing great. He is happy and charming and active and likes that we have matching scars. He makes occasional trips to Children’s for Liver Clinic and he is still well known by the doctors and nurses.